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Having a hard time

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Thanks for all of your thoughts for me. I am doing much better emotionally which is partially due to feeling better physically and the higher dose of steroids I am on. I was even able to clean up a corner of my bedroom where I had been throwing clothes and things for quite a while. Now if I could get the desire and energy to do the rest of the house!


My mouth still really hurts me. the bumps have gone away but my teeth seem to be biting and pinching my tongue. It hurts so much I gasp and jump. I went to the dentist yesterday but she didn't see anything wrong. She agreed with my doctor that I should see an Ears, Nose, and Throat specialist so I guess I'll be making another trip to the doctor. I seem to be clenching my teeth and forcing my tongue against the roof of my mouth. It almost feels like my mouth has become too small for my tongue. Is that possible? Could it be caused by stress?


I got the okay from Florida for dialysis there. I had to have a TB test to go and it came back negative. That is the first time they required that. So I will be getting some warm weather and some beach time in a couple of weeks. I am a summer girl so I am looking forward to it. I am looking into a portable oxygen concentrator. It will make things a little hectic but that's what the holidays are all about. I am making it easier on myself by getting gift cards instead of shopping, wrapping and shipping things.


Thanks for being there for me...

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Go to Florida and sit on the beach and contemplate nothing. Let the sound of the waves lift you away. If your depression meds aren't working talk to your doctor. I waited for so long to tell my doctor I was depressed, I spent 2 years telling myself I would get better. Reality has finally hit. I have systemic scleroderma with a really bad case of Raynaud's syndrome. All my skin is involved but my back. Life gets really tiresome but I look into my grandson's face and I know I have to go on. Keep the faith. We are only given what we can handle. You are in my thoughts from now on.


Nancy Muth

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Hi Miocean,


Events like Scleroderma has taught me many valuable lesions. Top of the list is “if I can not take care myself, I can’t help any one”. My psychiatrist kept on experimenting various anti-depressants (at least tried six or more) and nothing worked. Same way, I had to try so many sleeping pills before I could settle on Temazepam.


I tried to keep myself busy, I have full time job (indeed a stressful), I do yoga, breathing exercises, and go for long walks.


I do not expect anyone to help me or take care of me. I have tried to prepare for the worst.


In case I become disabled, I have taken long term disability insurance as well as long term care insurance.


First, you are very lucky to have your husband very supportive, you need to cherish the relationship and invest in the relationship, so minimizing chance of becoming him resentful.


Secondly, It is my experience that having a strong mindset helps a great deal in managing depression.


I hope this helps.


Take care!

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Just wanted to let you know that I am feeling a little better. I am still having problems with my mouth and am waiting for a call from the dentist. It is doing a little better. I am still having trouble eating some foods, especially things that are crunchy But at least there is some improvement.


Georgio oz, What is your secret to keeping a positive attitude? You seem to have a lot going on yet seem to be in such good spirits. I'll look forward to hearing it.



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Just wanted to update you. I've made arrangements for a portable oxygen concentrator for my trip and have a number of a company in case I need oxygen there. I wasn't able to get an appointment with an ENT until after I return. My mouth still bothers me so something isn't right. It is a little better and not pinching quite as much but is still sore.


I am a wreck!! See my post on kidney transplant.

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