Author Topic: In need of support  (Read 3193 times)

Peach15

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In need of support
« on: August 12, 2015, 07:03:07 AM »
I am a new member and have received some great support and advice on this site, and am very thankful. I am wondering if there are any members closer to my age that would be willing to talk/vent? I am very grateful for everyone's support, but feel very isolated as the majority of my peers are healthy and just don't understand. Thank you!
32 yrs old, Sjogren's (ANA 1:320 and multiple symptoms), Raynaud's, Osteoarthritis, Osteopenia. Plaquenil, Calcium/Magnesium, Vit D3, Vit K2 MK-7, Fish Oil, Glucosamine, Probiotics, Gluten Free. Theratears Eye Drops, Ayr Saline Nasal Mist and Gel.

SunshineDaydream

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Re: In need of support
« Reply #1 on: August 12, 2015, 11:58:47 AM »
I am a new member and have received some great support and advice on this site, and am very thankful. I am wondering if there are any members closer to my age that would be willing to talk/vent? I am very grateful for everyone's support, but feel very isolated as the majority of my peers are healthy and just don't understand. Thank you!

Sorry to hear you feel isolated based on your current condition, Peach. I can relate because I was diagnosed with my first AI disease (lupus) when I was 35. All of my friends and co-workers seemed to be healthy, with the exception of a one who was diabetic and another who had bipolar disorder, and carefree. It's hard to watch and hear about peers who are progressing with relationship, career and family while you are suffering with chronic symptoms or even with diagnosed disease under control but with niggling concerns that it can go off the rails.

Well, I'm 10 years in now and recently diagnosed with SJS, so not close to your age or stage in life. Not what you were looking for, I know, but thought I would suggest maybe finding a support group local to you.  Checking the Sjogren's Syndrome Foundation's website would be a good place to start. http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups  Also, this forum has a live chat every Thursday night.  Bucky or someone else usually posts a reminder thread on Thursdays in the Living with SJS message board. While attendees aren't necessarily your age, it is nice to "talk" in real time with other people who can relate to your symptoms and concerns, and answer questions you may have.  Finally, you can look into finding a good professional (therapist, psychologist), particularly one who is familiar with chronic illness issues, to listen to you. I went to one for a while when I was feeling overwhelmed with my health issues and found it to be helpful. My friends couldn't relate and I didn't want to burden or bore them, nor did I want to worry my family.

I hope you feel better soon.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Bigleyj

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Re: In need of support
« Reply #2 on: August 17, 2015, 12:37:53 AM »
Hi Peach15,

I understand, it would be good to talk with someone who really does understand.  All the same a psychologist would be a good idea, I used to see one.  Have you tried to see if there is a local group?

Anyway, I don't know if you would consider me close to your age??? But vent all you like.

Hope you are feeling a bit better than last time you posted.

Jo :)
Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

Peach15

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Re: In need of support
« Reply #3 on: August 19, 2015, 09:56:59 AM »
Thank you Sunshine. Having gone through it 10 years ago, you know exactly what it's like. It is very hard to watch your peers enjoying life when you feel like you have just been surviving and getting by. The hardest part for me is mourning how active and healthy I once was. I find myself getting so frustrated. Most days I struggle to make it through work (sitting at a desk) and just the walk to and from my car wipes me out. Three years ago I would work, exercise for an hour, run to the store/errands, make dinner, all in one day and wouldn't be phased. It's just very challenging to wrap your head around still being in your early 30s, especially while you watch most of your friends and family (some twice my age) do all the things I used to be able to do without any effort.

I appreciate the link to the Sjogren's Syndrome Foundation's website. My doctor has directed me there and I have received useful information from the site. Unfortunately there are no support groups listed for my state currently. However, I have done some research on my own and think I may have found a general one for AID in my area. I also may have to check out the live Thursday night chat. Thanks for the heads up. I have seen a therapist in the past during a difficult time but found talking to friends more helpful. However, that was before I had Sjogren's and I do think it may help me to see a therapist who helps those with chronic illness, as like you said most friends/family can't relate and you don't want to burden/bore them (I'm afraid I've already done so with some of mine).
32 yrs old, Sjogren's (ANA 1:320 and multiple symptoms), Raynaud's, Osteoarthritis, Osteopenia. Plaquenil, Calcium/Magnesium, Vit D3, Vit K2 MK-7, Fish Oil, Glucosamine, Probiotics, Gluten Free. Theratears Eye Drops, Ayr Saline Nasal Mist and Gel.

Peach15

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Re: In need of support
« Reply #4 on: August 19, 2015, 10:03:34 AM »
Hi Jo- I appreciate you reaching out and responding as well. I very well may send you a message or two  :) I think I am in the frustrated/sad/angry phase (was in denial before). I hope to get the acceptance phase one day. I'm sure I'll get there eventually!
32 yrs old, Sjogren's (ANA 1:320 and multiple symptoms), Raynaud's, Osteoarthritis, Osteopenia. Plaquenil, Calcium/Magnesium, Vit D3, Vit K2 MK-7, Fish Oil, Glucosamine, Probiotics, Gluten Free. Theratears Eye Drops, Ayr Saline Nasal Mist and Gel.

SunshineDaydream

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Re: In need of support
« Reply #5 on: August 24, 2015, 08:02:21 AM »
Nice "seeing" you during the chat last week, Peach.

I wanted to follow up here regarding the Facebook group I think you and others might be interested in called "Under 40 with Sjogren's". It is a closed group with means you send the administrator a request to join, and only members of the group can see posts. If you search "facebook closed group meaning" you can find a description of FB privacy options for groups.

I was researching another topic on this forum and saw Nymph mentioned the FB group in this thread where other young people responded: http://sjogrensworld.org/forums/index.php?topic=27737.0

I saw a several members under 40 post here in the Living with Sjogren's section last week. You are not alone.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

itzmejudy

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Re: In need of support
« Reply #6 on: September 25, 2015, 01:08:08 PM »
Hi

I am alot old but the problem you have is one I think everyone has. I have always done everything myself when something broke I fixed it and I went dancing several times a week. I traveled and also had a non profit helping the poor but now I cannot do anything. I was diagnosed with Sjogrens several months ago but I have other autoimmune diseases too. I have no family or friends to help me and the few friends I have I think are tired of my health problems. Not being able to do what you use to do is hard and to see people older then you getting around better then you are and having a better quality of life is upsetting. But we have no other choice so we have to make the best of what we have and if you can find just 1 person near you to talk to you are ahead of the game. You will have good days and not so good days but you can only do what you can do. I wanted to know if you have tried meetup.com to see if they may have a group if not for SJ maybe for autoimmune diseases they have all kinds of groups for different interests or maybe you can start a group yourself on facebook in your area. We all wish you the best and we are all here for each other.. take care
Wish all a great, pain free day and moisture for all. :-)

SjoDry

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Re: In need of support
« Reply #7 on: September 25, 2015, 01:39:56 PM »
Peach,

Sunshine is correct. The Under 40 group is run by Paula Sosin in NYC. Her number, as mentioned, is under the support group listing on the Sjogren's Syndrome Foundation site.

Periodically, Paula will host a meeting online in real time. That may also be a good way for you to connect to other Sjoggies nearer to your age by seeing each other on Skype or FaceTime.

Good Luck.
SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Supergranny

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Re: In need of support
« Reply #8 on: September 25, 2015, 03:51:09 PM »
Peach,

I can relate to you and also itzmejudy. I was diagnosed at 41 but I'm quite sure I've been dealing with sjogrens since my early twenties. Back then not only did the doctors not take my complaints seriously, my friends and family didn't either. I was labeled a hypercondriac and everyone thought I needed mental help. No one understood how I felt inside. I didn't look sick, but I was. I pretty much lost all my so called friends at the time because I was too sick to go out and party with them. Then remissions would come, although at the time I didn't know anything about remissions because I hadn't been diagnosed yet, but I just would feel back to normal. I would then go about living my life, working, having fun, making a new group of friends. Then in 1996 I wasn't sick but I noticed my baby fingers were stiff in the morning. I went to the dr and then a rheumatologist, they ran lots of tests and I was diagnosed. Still felt physically fine, friends all knew I had sjogrens but didn't really understand how bad it could be because I felt fine and we got together a lot and had fun together. Then I got sick again. After having to cancel get togethers several times because of it, they eventually stopped calling or emailing me. Family don't understand either. So here I sit today,, at 60, pretty much isolated because nobody wants to hear about how I feel and I really try to hide it but it's hard. So like itzmejudy said, it doesn't matter your age, you can feel isolated at any age. I was just saying to my daughter last night that I wish I had someone else at my same level of sjogrens to commiserate with. I'm experiencing a lot of heartburn and dry throat and sinuses lately and feel so weak, and as I was talking to my daughter who's 30 and an RN and usually so sweet and helpful, I noticed she was half listening and looking at her phone and just nodding. I know she's sick of hearing me complain and I really try to fake I'm fine and happy with her and everybody else because I hate being a drag but it's really hard. Sorry to go on for so long. It's my first post after being a guest forever. And I guess I have a lot to say. I just recently registered and when I read your post I just had to reply.

Take care, Diane (Supergranny)
60-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd
Meds-400mg plaquinil, 20mg.Prilosec, Biotin, atenolol, Gluten sensitivity.

Critter Mama

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Re: In need of support
« Reply #9 on: October 01, 2015, 05:22:48 AM »
I'm not quite your age, just turned the big 40, but I have been living with all of this since I was 28, so I have experience, not the same, but still. Being young, looking healthy, being considered lazy, being the oddball in the Rheunatologist office...I got stares from older people, people in wheelchairs or using walkers. No one understanding why I don't smile or why it hurts to be touched our need a hug but it hurts to get a hug. To be so tired despite sleeping, the depression, feeling OLD...No offense to older people, but when your 30 and your 70 year old grandmother calls you to see how yuh are because her arthritis is flaring to compare ailments...Its a little rough. I spend most my time with older people. My grandfather passed 2 years ago so on Friday night's my aunt, who recently found out she has RA, ands I go to my grandma's and play cards. We can't always shuffle due to pain, so we just pile then in the middle of the table and act like little kids ands mix them up. We try to have fun with it and I call it Friday night cards with the granny's. My aunt is a grandma. My husband and I haven't been able to get pregnant so my kids are four legged and furry and all fixed so I won't be a granny that way either. But Thu dint get what you want, you get what you need and I adore my 4 "kids" and my husband and for sine reason they all adore my grouchy butt right back.