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Rare disorder without a caregiver 
Started by Carlyn
25 Jul 2015, 7:07 PM

Hello Everyone,

I'm new here. I replied to a post in another thread and only found this section. I should have posted here first!

Reading some of the posts, so much resonates. We all do go through the same feelings and processes just in individual experiences that are different. It's comforting to know there is a place here to talk about these things safely. I've been spending a couple of days trying to figure out how to introduce myself. I decided to keep it brief as I can for now. Literally can't determine where to start for sure so I hope this is a good beginning.

I have a rare disorder, which affects my bones (deterioration), cognitive impairment (brain issues) and a lot of things. It's not autoimmune but it manifests many of the same issues as autoimmune. End stage for my illness can be anything from a blood or bone cancer to just quiet drift away in sleep due to organ shutdown.

Anyway, I've been the caregiver in my family of origin all my life. I'm 50 now and those I cared for have passed away in the last 15 years. My illness manifested about 18 years ago and is worse now and I don't have a caregiver. I live alone and pets are gone. i do alright I think but just now it's daunting mostly because of my brain impairment which at times is worse than others. Seems to be variable at times.

Despite this I'm here for two reasons - I need support myself, at times, or a backup brain I guess more than anything else. Being able to come here and ask questions which might be simple but seem difficult for me, may help me care for myself. I would appreciate any support or feedback if that sounds like it fits here. I'm really unsure and in process of trying to figure out if I need more help from the healthcare system or i'm just confused and things aren't as concerning as they seem.

The other reason is I like to support others and this is a way I can try to do that virtually which works really well with my illness. I have a lot of experience with that but it's all life experience, not educational or trained experience. I'm great at encouragement i've been told. So hopefully I can give back to that extent at least for now.

Anyhow, I just wanted to say hello and introduce myself a bit. I appreciate this site being here and wish I had found it several years ago actually. It's nice to see people helping each other so much here. That's very rare. In addition to all the professional experts as part of this site.  Looking forward to participating when I can.

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Reply by NatR
25 Jul 2015, 8:18 PM

Hello Carlyn,

Thank you for joining us here on the forum.  We are a variety of all kinds of experiences that bring us together...and for the most part, ( I could be wrong here) but I think many are women, and the few men who join in are more than welcome.  The men don't search out support like us women do.  Thats my personal opinion.

You will find us a warm, and funny bunch with quirky senses of humour and story telling abilities.  Some of us post often, some of us disappear for days and weeks and resurface to share a story or respond to a note like yours.

I am very sorry to hear that you are dealing with a lot - and it seems that  you have been there for others during your life - and now you are feeling a bit abandoned and lost.  That is where the Forum members shine.  We all try to encourage and support everyone...no judgement but only help and try to offer ideas, or send you to others who can.

I am glad to hear that you have online skills and that you would like to use your abilities with tech stuff to be one of the group and reach out to others who share their stories.  I think that is a perfect combination.  

We all come here because of one reason and end up staying to kind of "pay it forward" for others.  In so many ways we get a feeling of community here, we are able to give back after taking support, we can share a joke, or a funny story, we can cry along with you, we can smile when you have a great day or week.  We can reach out and make sure you dont feel alone.

I am a retired caregiver who has a family member with special needs.  I was a caregiver for her for the past five years - plus most of my life was given to caring for others in long term care.   I also have lost a brother, and both parents.  I have given and received from the members here.  Despite that we are anonymous we all care about each other, we know the nicknames and we know the personalities.

Please lean on us and let us know what we can do for you.  Tell us when you need support, or an encouraging word.  There is nothing nicer than to get a note from someone who took the time to write a personal note - from one end of the country or the world - to mine.  I can say that from experience.

I also feel that we all do better when we feel " heard" when we feel able to vent.  Some of us cant do it with our own families or friends.  Here we can do it - and let go of the pain, or stress.

You certainly are needed, you certainly are welcomed and you will find all the members here are nice people.  I have been here for several years and I wouldnt stay here if it wasnt for the fact I feel the connections we have...and even when I dont write often, I know I just have to put out a call for help, or support and someone will answer.

Wishing you a good evening, and hoping to hear more from you.
Best wishes from my keyboard to yours...sincerely,
PS.  Typos are allowed and readable.  We have a funny format here that also likes to help us re spell words - and I just live with it...ha ha. 
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Reply by Razz
26 Jul 2015, 1:37 PM

Welcome Carlyn.  Although I'm sorry for the circumstances that led you to finding this forum we're always happy to have a new "voice".  As NatR said we come from all over, with so many different backgrounds and situations and yet we all have one thing in common - the need to give and receive support.   

be good to you - Razz  
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Reply by JennJilks
26 Jul 2015, 2:44 PM

Welcome, Carlyn. Manaing your health issues is a full-time task.
My husband has prostate cancer. I'm also a hospice volunteer. Isn't it ironic?!

This is a very supportive group, I must say.
What I find helps, is keeping a journal. PUtting it all in print helps, as you sort through it. This is a forum where your journal, and people respond. It's a wonderful thing to do for yourself.

all the best...
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Reply by Carlyn
26 Jul 2015, 4:42 PM

Thank you very much NatR, Razz, JennJilks,

I so appreciate your warm welcoming and supportive as well as informative words.

Today is a strong fatigue day here. Staying awake and finding words is a struggle.  I'll come back later or tomorrow to respond better.

Thank you so much all of you. I'm relieved to make some connections and appreciate all of you.
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Reply by Carlyn
27 Jul 2015, 12:57 AM

And i'm back, finally! 

NatR, you're a wonder, as always. I'm sorry I didn't let you know ahead of time that I'm here as we know each other a bit from twitter already :-) Glad I fixed that earlier today finally! 

Razz, that's what i'm trying to do, be good to me. The problem is I can at times get focused on what those I love are not doing or what I wish they would do. Stopping that has been a very difficult adjustment.  I think my understanding of them would have come easier and faster if they would have communicated their feelings with me but they didn't. So it's been a bit of a road while i've been at the mercy of my illness. Now i'm in a place of acceptance and focusing on me and what I need, can do, can't do anymore, have to come to terms with never doing again, etc. It's all been healing though. The best thing i did recently was get the negative people away from me. There is one person I love dearly but it was just not going well and that was my only recourse. We are still in touch, still close I think... ? ... but communicating far less frequently. It has to be that way for both our sakes just now at least.  Anyway, i'm not worrying about it.  That person has a spouse, I do not, they've got more support than I do so I feel safe not worrying about them and focusing on me.  I've released them with love so I can get on with coping and trying to build quality of life.

JennJilks, considering what you have in your own life I think it's remarkable that you're also a hospice volunteer. Thank you for the great advice. You are so right, it does help. I got away from it recently but you're right, it's better to get it out so will get back to it.  I was going to buy a pretty journal at the bookstore and then realized I just tossed 8 of those from earlier years and that's a lot of money to throw out and shred! :-) My sister, now deceased, left enough office supplies behind that 15 years later I am STILL using them. So i've got loads of lined paper she left and i'm using that and an empty binder. What the heck. Paper is paper. I find if I write it physically it's more helpful than typing in Word on my computer...no idea why that is, i'm just going with it. Eventually I end up shredding it so fancy books are pointless with me.

I am sorry it took me all day to get back here. I've been so confused lately I'm apparently doing things backwards... that's not fun for anyone I know. I'm resting to keep pain manageable tonight. 

Thinking of you all and hoping everyone is getting through as well as they can. If any of you need support, or back up brain, I hope you let me know so I can try to return the favour of help or just emotional back up if I can't do more.

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Reply by Brayden
27 Jul 2015, 3:00 AM

Dear Carlyn,
I was just unwinding from a great birthday celebration with my whole family when reading your comments. So good to see you reaching out and I also want to assure you that you can say anything that you feel on here and you will not be judged. You already received some good support from this forum.
I am one of those that NartR says that come and go. I have been gone for some months but it was a great learning experience as my spouce had to deal with some  colon cancer. We have a great network of friends who supported us through this. I would like to tell NatR that men maybe are just more grounded, lol, and do not ask for support so quickly.
I am sure Carlyn that you will find this a great place to take us on your journay with you. We look forward to the ride. 
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Reply by NatR
27 Jul 2015, 3:58 AM

Hi Brayden,
nuce to see you writing.  Sorry for the personal illness of your spouse that kept you busy...I am hoping that things are going better and you will pop in occasionally.
Ok men are more grounded.? Lol - I better be careful,  as we could get quite a conversation going here:)

good night everyone...
ps who had the birthday? If it was you Brayden, happy birthday!  
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Reply by Carlyn
27 Jul 2015, 5:17 PM

Hi Brayden, thank you so much for your kindness and welcoming words. I understand the ebb and flow of life and weaving in and out of places. That makes sense to me. I'm so glad you're still popping in here and appreciate you posting. 

Natrice, you're funny :-) 
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