Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Checking In


  • Please log in to reply
11 replies to this topic

#1 Nina

Nina

    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 14 February 2009 - 02:57 PM

Hello to all ~ it's nice to see so many members posting.

I just wanted to check in to let members know what is going on with me.

I had my EDG/APG done on Wednesday at Thomas Jefferson University Hospital. The very GOOD NEWS is that my hemoglobin is at 12 ~ a number that I have never seen! For this I am quite thankful.

The doctor reported that my "spot" (G.A.V.E.) looked a lot better than it did in December. He also thinks that things should go well for me now. I should check in with my local gastro doctor (which I am going to change) and keep an eye on the hemoglobin.

I'm not totally happy with the amount of time that the good doctor spent with me (perhaps 10 minutes total of both Dec. and Feb. visits). I never did have an office visit, I was just scheduled for the EDG/APG, and spoke with him before and after the procedure. So much for the "visit" to the specialist. I'm being a bit facetious while trying to deal with my indifference.

As many of you may know, I've been quite down for a while now. And although I have gotten "good news" I remain in a somewhat down mood. I have been on Cymbalta for many years, and I am considering changing that because of my recent inability to bring myself up out of this slump.

If anyone has any suggestions, I would love to hear them. Each day I wake up and give it my all ~ only to find myself feeling quite the same at the end of the day.

Well, just wanted to check in and touch base.

Much love,

Nina

PS Happy Valentine's Day to ALL

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 15 February 2009 - 08:13 AM

Hi Nina ,

Gareth's been on Lexapro since being diagnosed. I just raised it from 15 to 20 mg/day. His psych doctor is so concerned about him going into a major depression.....he keeps constant tabs on him. I hope all goes well and glad to hear that the GAVE treatments worked.

Take care, Everyone.
Margaret

#3 bowbec

bowbec

    Senior Bronze Member

  • Members
  • PipPipPip
  • 43 posts
  • Location:Ooltewah, Tennessee

Posted 15 February 2009 - 10:37 AM

Nina,

Glad to heard that things are better for you!
Keep hanging in there, we are all going to feel better when spring gets here!

blessings You!
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 15 February 2009 - 11:05 AM

Hello Nina

Congrats on getting good news and improving!

Sorry you can't enjoy it and feel so low, I think sometimes we get "battle weary" so much so that even the good stuff barely raises a smile.

I can't help with the meds as I don't take any for depression/low mood, I have recently started amytriptiline for pain which I believe is also an anti depressant. Can't say I feel any different apart for a few days of feeling major aggitation (side effect) so wouldn't know if it's any good for depression/low mood.

Although I do have days where I feel I have had enough thankfully it never lasts long so I can't say I know how you feel as I don't. Have you thought about a "talking treatment" instead of medication such as counselling? As we all know from this site talking about "it" whatever "it" is can be theraputic. Ideally this is done face to face, I don't know if this is of any interest/help to you.

Keep posting and I hope things improve for you.

Amanda
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 15 February 2009 - 03:50 PM

Hi Nina

Nice to see you post and give us an update on how you've been. Glad to hear your tests are better but sorry to hear you are still having a difficult time in the slumps. I really hope that improves for you as well.

Amanda, I take amitriptylene for my Fibromyalgia and have for years. It really helps me with my headaches (as in I get a lot less of them since I've been on it, I believe it raises serotonin levels in the brain) and yes, it is also an anti-depressant, my understanding is that they use it in higher dosages when used for depression, can't say it does anything for pain in my case but I hope it helps you.
Sending good wishes your way!

#6 ozzy69

ozzy69

    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 16 February 2009 - 04:05 AM

Hi Nina,

I am glad to see your results are better. I took Cymbalta for over a year. I did it for the fibro pain. It seemed to make me more moody so I got off it. The withdrawls were really bad, so be careful if you are thinking about getting off it.. I would talk to your doctor and let them know it is not helping with feeling depressed. Hope you feel better,

Much Hugs,
Nina Gazerro

#7 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 16 February 2009 - 08:26 AM

My husband deals with bad depression and our daughter is a pharmacist. We went from med to med until she finally mapped out what he had taken and what had worked and what didn't. Through that she was able to determine that he needed one depression med for the seratonin levels of the brain and one for the dopamine levels. So now he takes an SSRI and another antidepressant which is in the aminoketone class, in a combination form. After having been on the meds enough of a period of time for it to get into his system, which can take up to 3 weeks or so, he was unbelievably better. I am so grateful she did this and talked to my husband's psychiatrist who agreed with her. Without it he was in such a bad depression. Now he's fine. So maybe something like this would work for you. There's nothing worse than being depressed and it's so hard for a loved one to watch it and not be able to do anything about it. It would be worth your while talking to your doctor about it.

I wish you good luck on finding something that works.

Warm hugs,

Peggy

#8 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 16 February 2009 - 09:02 AM

Hey Nina, that was truly great news about the GAVE, etc. Whew, what a relief things are looking up on that end (no puns intended).

On the subject of depression, if I haven't already posted this link, have a look at our page on Depression.

I also agree with Peggy. As with any other medication, there is no assurance that what works wonderfully for one person will work equally as well for another, or even continue working indefinitely. I'd definitely talk to my doctor and tell him that the drug I was presently taking is no longer effective and hasn't been for some time.

Warmest of hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#9 smac0719

smac0719

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 18 February 2009 - 01:50 PM

Nina,

It's so good to hear from you and I'm glad to hear about the GAVE. Knock on wood (and anything else I can knock on) I have not had any issues from GAVE. My rheumatologist and primary are doing a good job of keeping track of my blood levels to identify any changes.

I don't have any suggestions on the depression except for what's already been mentioned. If you haven't already, please discuss with your primary and try to find a psychologist that you feel comfortable with. When I feel down (and we probably all do at some point) I don't like feeling that way so I find something that will put a smile on my face. Read a good book, watch a movie comedy, look at family photos or photos of myself as a child in some of the hideous outfits my mom would dress me in! Maybe calling a good friend or friend you haven't spoken to in a while.

I hope you find some methods of coping soon. Take care!!
I may have Scleroderma, but Scleroderma doesn't have me!

#10 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 19 February 2009 - 08:40 AM

Hi Nina,

I hope you're feeling better these days. I know how it feels to be down in the slumps and nothing, not even good news perks you up. I thought I'd check in and say hi and I hope you're not in the doledrums any more. When I'm not feeling too swell and believe me if you could see through your computer, my hair sticking up in all directions still in my pajamas, you might laugh. And, if that didn't get a chuckle then imagine watching me running after my mischievious dog and cat while pulling up pants that don't fit me and fumbling with my phone. It's a typical day at my house.

Sometimes just doing a simple thing like getting out of the house to drop off mail makes me feel better just to get out. Or, even though I don't have small children I baked cupcakes on valentines and that was fun, not to mention delicious. My daughters (who are 21 and 23) and I ate most of them. I don't set high expectations for myself because the simplest things that I can do are the most enjoyable. Just talking to someone is even better.

Thinking of you,
Razz
Live well, Laugh often, Love much

#11 Nina

Nina

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 20 February 2009 - 07:21 AM

Wow, guys... I am amazed once again, I reach out and find a sea of supportive, caring WONDERFUL friends. Thank you all ~~

Just reading all the posts brings a smile to my face for sure!!

I'm still struggling, but since I seem to be such a survivor ~ I've managed to get from one day to the next.

Perhaps I should tell you that I have been in and out of (face-to-face) counseling for most of my life. Since my early 20s ~ when I realized that I had a problem with depression. At any rate, I had been in counseling for the past 7 years pretty steady. Unfortunately, the co-pay got to be too much and I stopped going. I know how important that was to me and I do realize it's time to find a "clinic" that will accept me (with only my medicare payment).

I am also all too familiar with the withdraw symptoms of Cymbalta ~ I ran out once and didn't have any for three days ~ I thought I was going crazy. The odd sensation that it caused in my head was maddening. I am going to come off of them very, very slowly. And I hope that my mouth gets a little better.

I have a very dear friend who I am going on a short (1 week) trip with in April ~ so will keep that in my mind at all times, knowing we will have a wonderful time.

Must go for now, but I promise to touch base at least once a week. Thanks again to everyone for your caring and concern.

Much love,

Nina (DE)

#12 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 20 February 2009 - 12:05 PM

Big, big hugs to you, Lovey. You deserve a lot of credit, in my book.

Much love,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network