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Posted on 6. September 2012

Let's Get Connected

By Annaben Kazemi

There’s a hidden reality for people living with chronic illness. Having a chronic illness is often isolating. First, there’s the overwhelming feeling that others just don’t understand. “You don’t look sick,” they often say, or they act miffed when we miss another social engagement because we are too tired or not feeling well. The last-minute cancellations and the illness others can’t see - this is the isolation that can lead to feeling overwhelmed and alone.

I have found that having a support system enables me to get through the toughest times. Recent studies show that creating intimate social ties, seen as an integral part of daily life, generates a host of psychological and civic benefits. Not only does a support system give me support, but I’m giving support as well. Sharing what I’ve learned along the journey and helping someone else gives me satisfaction and helps me to know I’m a part of a bigger community.

An abundance of research has emerged in the past few years about the health benefits of friendships. Having a close-knit community helps people fight depression and illness, slows aging, promotes mental health and even leads to a longer life. That’s why it’s so important for people with chronic illness to have a community to turn to. It’s important for us to find a community that “gets it” and is dealing with the same issues - a community where other people are discussing matters that are personally important and relevant to us.

Because the immune globulin (IG) community is small and spread out, and the diseases themselves are mostly rare, it can be difficult to find a community in our hometowns. That’s why online communities have become the biggest support network for us. These communities enable patients and caregivers alike to reach out to one another. They let us know we are not alone; someone else has been or is going through this too. They empower us by giving us knowledge and understanding. We can give and get advice from others who are “living it.” We become friends across the country with people whom we’ve never met, but they know us better than anyone in town.

We all need to feel connected with others. While there is a plethora of online support, IG Living also offers that opportunity through its Facebook page, blog conversations and a new teen chat group. So what you are you waiting for? Let’s get connected!

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Comments (11) -

DD
11:41 AM on Friday, September 07, 2012

While an online support group is invaluable in helping with a chronic illness, we should not underestimate the importance of developing friendships with people outside of that community. My "healthy" friends may not be able to pass on information about my illness, but they love me, support my decisions, bolster me during the many tough times, fill in with transportation and meals and whatever else my family and I need, and provide spiritual strength. I could not carry on without them.

Desperate
7:15 PM on Saturday, September 08, 2012

I am on Hizentra and am really suffering with diarrhea, stomach pain, bloating, nausea and I just stay in bed.  I have read that this is a common side effect of Hizentra.  I am having financial and other problems and can't work due to this disease.  I am married recently but this illness is causing me just too many problems and I am falling apart.  Any suggestions.

Desperate
7:16 PM on Saturday, September 08, 2012

Extremely sick on Hizentra sq, stomach pain, bloating, diarrhea and nausea.  Many other problems.

Mary
8:34 PM on Tuesday, September 11, 2012

I was diagnosed with agamma globulinemmia when I was 28 yrs old. I will soon be 66 yrs old and have seen the treatment improve so much over the years. I am the one who knows what is wrong with everyone else around me because I probably have had it already.[infections that is] But I find that the I.V.`s help me out so much. My brother has it as well and his son too. They have a lot more problems with the med`s than I do. I thank my God through Christ for everyday he gives me. If your med`s make you sick have your doctor change the med`s because they are not equal......

wild4hairgirl
6:14 AM on Wednesday, September 12, 2012

Dear Desperate,

I also suffer from the same side effects as you on the Hizentra.  I have only been on Hizentra sq since last Nov 2011, and my asthma and other problems actuallye escalated during that time.  I don't know if it is the change in seasons, but recently, several weeks I have been extremely sick with the stomach pain, bloating, diarrhea.  I also can't sleep so I am extremely exhausted.  I have been on less antibiotics so far this year but not sure about my other problems as everything is resurfacing at this time.  Please keep writing as I also have the financials, claims not coded correctly, and have been fighting diligently to get this resolved.  The stress can be incredible with no one really wanting to hear about your problems.  Try medidation as I have found that it is a source of some stress relief.  Thank you for your comments as I spend hours hoping that someone will come up with a cure for my immune system problems, I am also desperate just like you for an answer to my illness. I too, was recently married, diagnosed, been trying to start a small business and trying to keep from falling apart.

Kim Bryant
4:59 PM on Wednesday, September 12, 2012

Hello,
I am not sure if I am going to show up on the blog or not. I tried to get on before and never managed to. Is there a certain site that I can go to. I would love to talk to people who get IVIG. I started in June once a month. Now I just started twice a month. I have been diganosed with Idiopathic Small Fiber Neuroopathy and Sjogren's. Not sure if I believe the Sjogrens. Please let me know if this is where I should be or if there are any other sites on line that are for people that receive IVIG treatments.
Hopeful

I.G.Living
5:12 PM on Wednesday, September 12, 2012

I am so sorry to hear that you are suffering. Thank you for reaching out to us with your concerns regarding the side-effects you are experiencing with Hizentra. It turns out these are not expected adverse events associated with Hizentra, and I too am concerned. I strongly recommend you contact your physician, and hope that together you will be able to resolve this issue quickly. In the meantime I’d like to direct you to the Voice2Voice program that connects Hizentra patients and caregivers with an experienced advocate.

You can contact the Voice2Voice program at:
www.hizentra.com/.../...a-voice2voice-program.aspx

This is their link to register: https://www.voice2voice4pi.com/

There is also a phone number for patients who don’t want to register on the internet:
1-877-355-4447

Should you want to speak further, or have more questions, please do not hesitate to contact me directly.

Best Regards,
Annaben Kazemi,
Patient Advocate I.G. Living Magazine

I.G.Living
6:18 PM on Wednesday, September 12, 2012

Hi Kim.

Welcome! I’m so glad you found our community. There are several sites you can go to for additional support. First I recommend joining I.G.Living on Facebook, where there are many other people you can talk to who are receiving IVIG.

•  To talk to other patients who receive IVIG, visit I.G. Living’s Facebook page:
http://www.facebook.com/#!/IGLivingMagazine

•  On this site under the blue “Patients” tab, they provide a list of support groups for patients diagnosed with Sjogrens:  http://www.sjogrens.org/

•  Neurotalk supports Idiopathic Small Fiber Neuropathy through an on line chat group at: http://neurotalk.psychcentral.com/index.php

I’m glad you found our blog. I hope you will find our blog and website helpful. Please do not hesitate to contact me should you have any question.

Best Regards,
Annaben Kazemi
Patient Advocate I.G. Living Magazine

irene grubbs
7:51 PM on Friday, September 21, 2012

I have what is probably a naive question but here goes-- I have CVID & a host of auto-immune diseases. I do not take IVIG b/c no combo of pre-meds&slow drip stopped the serious side effects. My question is: is it typical to feel really ill every day b/c of these illnesses? Like exhausting flu every day. My drs. just shrug & say I just was dealt a bad immune hand. Do others of you experience this consistently ill feeling? Is this just how it is? I do all the rec. good diet, etc., but nothing helps.

Gail
10:59 PM on Wednesday, September 26, 2012

I recently became aware of the Immune Deficiency Foundation (www.primaryimmune.org) and was pleased to find that they sponsor many patient educational meetings in various cities. I have signed up to attend one in Cleveland on Oct. 27, where I hope to meet others struggling with CVID. The Foundation has lots of info on the website, and they offer peer support. Others might want to check out the Foundation.  

J. Walker
9:37 AM on Wednesday, March 27, 2013

In answer to Irene Grubbs, I am a 65 year old semi-retired teacher and for years I feel semi-nauseated daily, along with auto-immune Hashimoto's and within past year diagnosed with (and receiving IV treatments for CVID.  When I think back to my long deceased dad, he too had everything I have plus much more, constant sinus (me too), asthma, not me thankfully, but if I'd only known what I now know, maybe he couldhave been helped.  I'm always, always worn down and exhausted, no energy. I've tried everything in the world including herbs, super healthy diet, 8 hr. sleep, rest, so hang in there Irene.  I know EXACTLY how you feel and it always makes me cry to now know that I wasn't just being a "wimp" as my siblings would say.  Write back any time- we'll give each other encouragement.  It could be much worse!

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