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#1 miocean

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Posted 16 November 2009 - 06:22 AM

It is hard for me to write this. I am usually good at maintaining an upbeat attitude but the last week has been really rough on me. I hate to complain about things but here I go...

I got a sore throat and went on antibiotics for it. Didn't do any good and then my mouth broke out in bumps and was really sore. Back to the doctor who took cultures and a chest x-ray. All came back negative. I had trouble breathing. I have interstitial lung disease (ILD) and am supposed to be on oxygen (O2) when I exert myself but over the last few months have felt like I haven't needed it. However, last week I used it 24/7.I am going to the pulmonologist tomorrow but am worried that he will put me on it all the time.

I am on antidepressants but have been really down. I find myself just sitting and staring into space. I haven't been able to do any thing and things are piling up. I sleep a lot. I am not scheduled to go to the psychiatrist for a couple of weeks.

I have had diffuse sclero since 2004 and have been on dialysis all that time. I should be called for a kidney transplant within the next year. I just finished updating all my tests and everything came out fine except a stress echo on my heart so I probably have to go back to the cardiologist. I am so sick of going to doctors. That's all I do, that and dialysis.

My husband is really supportive and has taken on the burden of a lot of things. He doesn't complain but I am afraid he might start to resent me. We are supposed to go to Florida for a week in December if I can get dialysis down there. I hope I'm not on O2 because that causes a whole new set of problems.

Well, thanks for listening. Any advice/encouragement you can give me will be much appreciated.
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#2 Shelley Ensz

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Posted 16 November 2009 - 07:44 AM

Hi Miocean,

I'm sorry to hear you're not feeling well and having more challenges than usual. Are you feeling extra stress from the idea that you are supposed to go to Florida for a week next month?

My husband and I both find it very challenging to do any travel, and neither of us are on dialysis. You might want to discuss your travel concerns with your husband and see if there is a chance you could find something close to home to do. Our last vacation, my husband and I stayed right at home but just did something new every day. Our only requirement was it had to be something we hadn't done before, or at least, for many years. Even if it is just playing a new card game, it adds some extra zing to the day. He took me on a tour of local non-chain coffee shops that we had never been to, and so forth.

A few days I was too zonked to get dressed (good card game day). So you can imagine, I would have been very stressed to be far away from home and not being able to do things. It takes so much energy for us just to manage anything anywhere near normal; ironically a far away vacation, no matter how tempting, would just not have any appeal for me right now.

Perhaps your pulmonologist visit will ease some of your concerns. I think most of us don't get A pluses on echos anymore, but they aren't very likely to be life-threatening, not as serious as the other things you are dealing with.

By the way, my husband is awaiting a lung transplant. He was already called once, but at the very last minute the surgeon rejected the donor lung. It can be tedious and nerve wracking to just be waiting for the transplant call! So we have extended our vacation idea into the whole year, trying to find something new to do every day (and, as needed, postponing some events with no guilt; it is the thought and focus that counts!). We have discovered some really wonderful neighborhood spots this way -- and nearly all of them near his transplant hospital so that we will also have some fun places to stop after his surgery, when we are going to all the follow-up appointments.

If you're afraid of disappointing your husband, why not try to see if you can think up something a little bit new, fresh or different to surprise him with this week? I find thinking "outside the box" helps me cope with everything a bit better.

Meanwhile, here's some extra warm hugs and flowers, just for you, to brighten your day a tiny bit. :flowers:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Sharon T

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Posted 16 November 2009 - 10:21 AM

Hang in there, Miocean! I too have ILD, as part of limited Scleroderma. My husband and I love to travel, but the last time we went on a 4 hour flight, I had to go on oxygen for part of the trip, which was no fun at all. I hate having to make concessions like that for this disease! I also hate having to worry about catching a cold or flu - luckily I'm old enough that I've had most all of the viruses going around :-) And I totally agree with you about not wanting to have to be on oxygen all the time!

I tend to get most depressed when I'm at loose ends. I work full-time, so its not much of a problem during the week, but on weekends if we don't have anything planned, I start thinking too much. I find that I have more energy if I actually start doing something, even if its just taking a short walk with husband or dogs, or starting a new cross-word puzzle or knitting project. The difficulty sometimes is getting the mind-set to start! I like the suggestion about doing something different every day, like going to a new coffee place. I know I'm more tired these days than I used to be, but it does brighten up my day to get out of the house, even if just for a short time.

Sharon T.
Sharon T.

#4 enjoytheride

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Posted 16 November 2009 - 10:28 AM

1) You have a right to complain; you feel bad and that is hard.

2) Your husband may resent the disease, not you. And he has a right to that feeling too. Maybe you should set up a scelro dart board- label the section with the things you hate the most- then whang as many darts into it as you can. I personally have a doll that I stick pins into rather violently to relieve my tension- take that cold nose (stab stab stab)- take that calcification (stab stab stab.) Doesn't make anything better except my anxiety- for me it's a stress reliever.

3) When you have had enough just sitting and staring into the distance, you will stop. Right now that's coping for you. Don't beat yourself up over beating yourself up. :)

4) Make sure to tell your husband that you worry about the effect of this disease on him too. Let him know that you can see it's hard on him too. Everyone like a little validation.

I hope that this is just al little jog in life's path and that you will be able to do better shortly. ((((hugs))))

#5 georgieoz

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Posted 16 November 2009 - 11:01 AM

Wow mioceans,

You have got a lot on your plate. I also do dialysis I do peritoneal dialysis 4 times a day seven days a week. It can consume your life and be very tiring then add to that all the other medical issues we get with systemic scleroderma it can all be very over whelming at times. I nearly went down that black hole trying to deal daily with a myriad of symptoms then I decided it was time to sink or swim, but to swim I had to work a bit harder.

I devised a plan that my pain psyche taught me I just revised it so it fitted my situation. It worked wonders for me. I have not had a miserable day since I am as happy as pig in mud, yet I do dialysis still, I have a nerve disease , Raynauds, tendonitis, spastic hands and feet, I need a walker to walk and hands are near useless. Medically I am a mess because of systemic scleroderma, yet I am as happy as can be. Because of the state of my hands typing is a challenge but if you are interested to see how I manage the psyche side of illness then I will be more than happy to type out what I do to maintain my happy disposition. Good luck, stay strong,

georgie oz

#6 Vanessa

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Posted 16 November 2009 - 11:33 AM

Hi Mioceans,

You really seem to have so much to deal with that I just wanted to send you loving best wishes.

Thinking of you.

Vanessa

#7 warmheart

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Posted 16 November 2009 - 12:03 PM

Hi Miocean,

I don't have any advice to give, but just want to chip in with more support. A psychiatrist once told a friend of mine, who decided she needed therapy, that she wasn't depressed the way depressed people are depressed but the way sick people are depressed. In other words, that it was normal under the circumstances to feel and act the way she did and to take care of herself, not to get down on herself.

Wishing you happier times ahead,

warmheart

#8 Jeannie McClelland

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Posted 16 November 2009 - 12:31 PM

Hi Miocean,

I have ILD too and am also supposed to use O2 when I exercise. Things were going so well there for awhile that I wanted to turn the O2 gear back in. My pulmonolgist told me to hang on to it because if I got a respiratory infection, I would want it. She was right - well, she always is! I was absolutely shocked at what that silly infection did and was extremely glad I had the O2. Once I got well and truly over it, I was able to just drop back to 'with exertion.' Hopefully you will too.

When I travel, especially fly, I take a portable oxygen concentrator (POC) with me. The FAA regulations now require airlines to accept them and I believe more oxygen companies are offering rentals of FAA-approved models. I call ahead to the airline and let them know I will be bringing it. I usually need to have my doctor sign one of their forms. The POCs don't even count against your carry-on luggage.

I'm with everyone else. We earn the right to get blue. Don't be tough on yourself, but also don't try and pretend everything is fine when you don't think it is.

I apologized to my husband about a year after my diagnosis for being sick, for the time and money that were being diverted from other things. Deary me~ Apparently he thinks I'm priceless! I'll bet yours thinks you are too.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#9 Sweet

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Posted 16 November 2009 - 01:57 PM

Dear Mioceans,

Thanks for being willing to open up your sweet heart to us. It is so hard to do that at times, but it can help you and us in the process. You said somethings that I've thought, but am unable or unwilling to to verbalize out loud.

Shelley as usual had some great advice. Discussing some of this with your hubby is a good idea. I'm really glad you have him for support. My husband is the same way, and I've actually had the discussion with him about whether I am a burden, or if he resents me because our lives have changed so much. What he said to me, is that the hurt he feels having to watch me go through so much and not being able to "fix it" is very hard on him. So all the things he does for me, just like your husband does for you, he's so happy to do, because it's something he CAN do.

Not sure if that helped, but my heart is with yours.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Snowbird

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Posted 16 November 2009 - 02:16 PM

Well Miocean

I think you are doing pretty good considering everything you are dealing with! Don't be too hard on yourself...everybody has their limits and let's face it, some days our limits are less than other days, it's the way that ball bounces! That's to be expected from anybody that is having health issues, let alone more than one issue at a time.

I expect you are a little disappointed too deep down if you don't think you can manage a trip successfully with him just now (that can certainly make us feel guilty sometimes too ;) . After all, who wouldn't like a little sunshine now and then...but try not to worry if it really can't work out for now, I'm sure your husband will fully understand and I bet you'll plan another trip a little later when the time is more fitting. Take care. :flowers:
Sending good wishes your way!

#11 Shelley Ensz

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Posted 17 November 2009 - 09:22 AM

Hi Miocean,

Are you doing any better today? How did things go with your pulmonologist?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 debonair susie

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Posted 17 November 2009 - 10:54 AM

Hi miocean,

I hope you have seen the pulmonologist and that you are doing better.

As so many (before my posting) already mentioned, it is very rough when having health issues such as those you've been having.
However, you have done so well with your coping skills...to feel as you do, is not at all abnormal. However, you might want to visit (with the prescribing doctor) about re-evaluating the anti-depressant you are on, which just might need to be tweaked, either, increasing the dosage or changing meds, if he/she deems it necessary.
Of course, your doctor would know - I only have a license to drive a car :P .

At any rate, I am hopeful that your doctors will hone in on what can be done now, by looking at the big picture.

In the meantime, the ladies here know that you are not giving credit where credit is due...you and your loving hubby deserve a bouquet of flowers :flowers:...so there!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#13 miocean

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Posted 18 November 2009 - 04:00 AM

Thanks everyone, your replies really helped. I went to the pulmonologist yesterday. I brought my small O2 container with me but didn't fill it right and ran out before the doctor saw me. My pulse ox without it was 95 which was good. He looked at my chest xrays and said they didn't look too bad but just in case there is some pneumonia he put me on an antibiotic for 5 days. He also increased my steroid to 10 mg for one week and then it declines every week by two mg until I am down to 2 mg which is what I am on now. I am due for my yearly CAT scan in December so I will get that done and then I see him again in January.

I am feeling in better spirits after hearing from all of you and seeing the doctor. The sun is shining today so I am going to do some shopping and go out to lunch with my husband before dialysis. My mouth is still sore but that I can deal with. Thanks again!
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#14 Sweet

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Posted 18 November 2009 - 05:21 AM

Hi Miocean,

I'm glad your spirits are lifted a little. Keep on smiling.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 enjoytheride

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Posted 18 November 2009 - 04:08 PM

Good to hear- hope you got something great on your shopping trip.

#16 barefut

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Posted 20 November 2009 - 01:40 AM

Thinking of you Miocean.

Sending you blues zappers! And a big, long, tight (but not too tight) hug - can you feel it? :emoticon-hug:

All the best to you,

#17 Shelley Ensz

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Posted 23 November 2009 - 07:29 AM

Hi Miocean,

I'm glad you're feeling a bit better. I hope the antibiotics have kicked in good now, too. Hopefully in time for you to enjoy a pleasant Thanksgiving week. :emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 miocean

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Posted 24 November 2009 - 06:23 AM

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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#19 Snowbird

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Posted 24 November 2009 - 12:27 PM

Hi Miocean

Glad to hear things are looking up for you and that you are feeling better....keep up the good work!! :emoticons-yes:
Sending good wishes your way!

#20 nancymuth52

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Posted 24 November 2009 - 02:08 PM

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