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Signs Of Progression Getting Me Down

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#1 barefut


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Posted 12 November 2006 - 05:16 AM

Woke up to a sore on my right middle finger today. Probably calcium.

More painful in my head than on my finger.

Anything I can do or not do, to make it better or keep it from getting worse?

What about for my head?


#2 Hailee


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Posted 12 November 2006 - 07:53 AM

Hello Barefut,

There are some circumstances that we can work around and some that we can only work through.

I know that because I have dealt with severe neurological problems where I coudn't even control my limbs and had a seizure and convulsions where I had no control over my body, there wasn't anything I could do.

If however I think back to when I was still healthy, I would always maintain a positive attitude in the face of minor problems. I always maintained "You have everything when you have your health." The situation isn't so easy however when one is facing serious distress and pain. Imagine one's head being held under water or being severly sick or pained in any way and someone else saying, "Keep your chin up" or "You've got to keep a positive attitude."

It really depends on how much we are suffering. I know that when I broke my leg, it wasn't a big deal. It was an inconvenience--that's all. I could laugh about it. But for a disease that affects every body system, it is very different. I can't list it all in a small post, but it has taken away even my ability to walk around, sleep, and I have had heart problems, it beating as much as 160 per minute.

What I would suggest is to concentrate as much as you can away from whatever you are experiencing. This can be extremelly difficult. I know that for a long time I was suffering so much I couldn't even hold onto a book let alone read one. Yet now I am able to use my hands again and I am so am thankful for that. I have even started playing the guitar a little bit again.

If you are able to laugh, then laugh and find as much comedy as you can. But don't feel that you have to be so strong.

Do what you can do; you can't do more than that. I often try and think about what my mother use to say when she was alive. "That the human body has amazing healing ability." Well, I honestly have been through times when I thought that I was very close to the end. One foot in the grave and the other on a banana peel. There is no sense to be made from it. We cannot fathom why we are sick or why we may experience a measure of healing.

I honestly hope that although it really is a cliche thing to say, we may be able to keep hope in the face of all adversity.



#3 barefut


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Posted 13 November 2006 - 06:53 PM

Thank you Hailee,

I read your reply 3 times and cried through this last read. I do sometimes feel like I have to be strong and not let these little things get me down but it's so hard sometimes when you already have a pretty good idea what's in store for your future health wise.

It's a double whammy when you're in the midst of filling out divorce papers, worried about health insurance, finding a way to make a living, keeping your home, your sanity and your children's emotional health intact.

I am so envious of couples who have supportive, loving, caring spouses. I can only imagine how much more safe and secure they must feel even in the face of adversity. If I had that, I could just focus on my health and living well, maybe even do some charity work, instead of stressing about what the future holds for my boys and me.

I am paralized by fear of the unknown. I can't move forward with my divorce because I don't know what might happen to me. I need health insurance. I need to keep my home. I can't afford a lawyer. I'm trapped. I have so much research to do on so many subjects (Getting licensed for daycare, the ins and outs of the divorce paperwork, COBRA, SSI, SSDI, alphabet soup!) that my head spins and I get overwhelmed and go into paralization mode.

I like to pretend that there is nothing wrong with me and it works pretty well for short spurts. Then one thing or another flares...IBS or a calcium deposit or SOB or reflux....all minor things I know but still reminders of the big black cloud hanging over my head - one of them anyway, and I have too much on my plate to be reminded of scleroderma everyday and let it get me down. So I go on pretending. Pretending that I'm good. Pretending that this is only as bad as it will ever get for me.

I wish I could see into the future. I wish I had all the answers or I wish someone with all the answers would please tell me what to do. I wish I could win the lottery so money wasn't an issue here because that's what 90% of my worries are about. Yes, even more than my health right now, money is my greatest worry. That's what it all comes down to. Money could take care of a lawyer who would have all the answers so I could get on with my life and money would allow me to be able to pay for these EXPENSIVE MEDS, keep health insurance, and my home and allow me to not have to go to work in this condition.

Gee, my life looks bleak all laid out like that.

And YES, I have SO much to be thankful and grateful for and I AM! I SO am. I am thankful and grateful every day for my kids and for the fact that my sclero is not, at present worse than it is. I am grateful and thankful everyday that I have a roof over my head and a vehicle to drive, and a credit card to help put food on the table.

But being grateful for what I DO have does not make my present situation feel any better. I feel like I'm running in glue.

Wow, sorry for the long post or I should say vent. I didn't intend to go on and on that way.

I just wanted to say Hailee, I loved your reply. I'm saving it and going to read it over and over when I need to.

And I will remember to do what I can do because I can't do more than that. And I will try to not feel judged by what I can't do. And I won't try to fathom why I am sick but I will keep hope alive for healing.

And I will post that last paragraph on my bulliten board and say it out loud every day and remember that Hailee inspired me to think that way.

Thank you so much,

#4 scleroguy


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Posted 14 November 2006 - 02:41 AM

Hi Barefut,

I don't have anything to add to what Hailee said. I just wanted to send warm and happy thoughts to you, and to let you know that I have been eating chocolate for you (and me) while I still can.


Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#5 susie54


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Posted 14 November 2006 - 04:21 AM

Hi Barfut,

I read of your plight and think of my son who went through a divorce only a year and half ago, or my sister who helped me understand all the feelings because she had once gone through a divorce. I thought my son would never be the same again. He grieved as if someone he loved had died. But in truth , divorce is leaving what was safe and supposed to always be there for us. Then to put an illness that takes energy everyday just to get through it puts another weight on top of the divorce. So yes you are dealing with a double whammy . Please use your friends and family to lean on and look forward, not back.
My son has slowly returned to a personality that used to be him, laughing and loving. It was a slow grieving process and one that took many friends and family to help get him through. Time is the key to everything. I believe it can heal and move all of us forward if we just keep looking that way.
I do feel for you so much. Susie54

#6 Sweet


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Posted 14 November 2006 - 07:16 AM

Hi Barefut,

I was just thinking of you and wondering how you are doing today. I re-read your posts and my heart goes out to you. I know sometimes I can feel pretty sorry for myself, but I am lucky enough to have a very supportive husband by my side.

Listening to you made me think of my daughter. She's not sick, but is a single mom of 2 children, with no education, doesn't have a good job, has her rent payment subsidized - she's at her wits ends most days. She's so determined to stand on her own two feet, but she has a rough go of it. We try to help in anyway we can. I know it can be a very desperate feeling and that is what I'm hearing from you.

May I ask if you have any family that can help you out? Sometimes, just having a shoulder, a hug, sometime to take the kids for a bit, or someone to help you research stuff is a big help.

The other thing I wanted to mention is there are many attorneys out there that work off of a percentage. Meaning you don't pay them anything until the deal is done and then they take part of it. I was thinking that may work for you for the SSDI. There are attorneys that specialize in that and once you are awared the money, they will take a percentage. Do you think that would help you?

A similar situation could work for the divorce as well. Do you stand the chance of getting the house in the divorce? Or would it work out to sell it and then you'll have the money from that?

On to medical insurance. I believe you are in the State of Washington like me. Have you checked into "Washington State Basic Health Plan" If you qualify your premium will be based on your income in the form of a sliding fee scale. "Community Health Plan of Washington" is another similar plan.

I will send you a Private Message with some links for health insurance.

Also LifeWise (by blue cross) is good insurance and will be MUCH LESS money than Cobra. When I lost my job over a year ago, my company offered me cobra. I was shocked at the premium. A friend told me about LifeWise and we signed up for that right away.

Not sure if any of this is helpful or not, but I want you to know you have support here and if you have anymore questions, or need help from me, I'm here for you!!!

Love Sweet

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 barefut


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Posted 14 November 2006 - 03:33 PM

Thanks Scleroguy; I can taste the chocolate now. :P and my esophagus is already flipping out on me :lol:

Thanks to you too Susie. I keep reminding myself that I won't always be running through glue. I will someday be done with all of this divorce stuff even if someday takes awhile.

I have a sister 2 1/2 hours away (Seattle) and she is a good support person. I rarely get to see or talk to her though as her career keeps her quite busy so I come here for cyber hugs. A REAL one would be nice once in awhile though.......

Thank you for the valuable information! I got the links and will definately be going there. And thank you for your offer to help me. I appreciate that more than you know.

For a long time I didn't tell anyone about what all is going on with me (sclero & divorce) I felt like nobody would care or want to be burdened with my stuff when people have their own stuff to worry about.

Since I've opened up, I've been surprised at people's responses. People who I thought I might get the most support from disappointed me, and the most unlikely people have shown genuine sympathy and real support.

Just goes to prove to me that in the 'real' world, nothing ventured, nothing gained. And it's good to know that I can ALWAYS come to my cyber world without fear or trepidation and find kindness and support.

Thanks again to all
Love, Barefut :)

#8 Guest_Jennifer_*

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Posted 16 November 2006 - 11:19 AM

Hope you are feeling better today. Hang in there!