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All Is Not Well In Sclerodermaland


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#1 miocean

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Posted 05 May 2011 - 10:51 PM

Hi All,

Many of you are familiar with this story but for those new: I was diagnosed in 2004 with diffuse scleroderma and suddenly had a crisis where I stopped breathing, my heart stopped and my kidneys failed. I was on dialysis until March 2010 when I had a kidney transplant. Over the years I was diagnosed with upper and lower GI issues, lung fibrosis, a diffusion rate of 38%, pulmonary hypertension, high blood pressure, high cholesterol and a skin score of 45 on a scale of 0-50. I could barely walk and my fingers curled. I suffered from depression. I've had over 5 years of physical and occupational therapy. Before the transplant my skin began to soften and post transplant my skin score is now a 3. According to my last Echo I no longer have PH. My diffusion rate has improved to 45%. However, my lung fibrosis has increased on both my lower lobes and is now on both my upper lobes. I also have osteoarthritis in my thumb, wear a permanent splint and face surgery eventually.

I've always tried to maintain a positive attitude and especially since transplant have highlighted to others the improvement and I definitely am much better than when I was on dialysis. I was taken off anti-depressants but have many anti-rejection drugs to take along with those for still present scleroderma issues, including prednisone and prograf, both dangerous drugs but necessary to maintain the kidney. One will destroy my bones and the other causes cancer. They also both cause anger issues.

I have always been a rather mellow person, although at high stress times would get a little hyper. Within the past 4 months I have experienced a lot of changes/stressful situations. We renovated our townhouse from top to bottom, beginning in October and causing us to relocate to an apartment in February. It was done in stages and although I am now back home I figured out we "moved" 4 times in 4 months. There are still boxes everywhere, painting to be done, and rooms to be set up, but I am home. I volunteer for two non-profits, including the ISN, but have recently found my work for the other one is equal to a full time job, plus I am having personality issues with the head of it. I have a friend in Japan who suffered through the earthquake/tsunami and other who nearly died of diabetic ketone acidosis all in the same week. I was hearing terrible stories of sick children. I ran out of an anxiety medicine I have been on for 40 years due to miscommunication between the pharmacy and the doctor. I turned into a terror. I over reacted to many things. It damaged my relationship with my husband who literally became afraid to talk to me. I hardly ever hear from my friends and those that I thought were new friends are not really friends. However, it has always been the case that I am the one to contact my friends rather than they calling me so that is not really a new thing. I also have fatigue issues, sometimes I am in bed at 3:30 p.m.

I believe everyone thinks I am "cured" because of obvious physical changes since the transplant and my portraying everything so positively. I am problem solving, setting up a committee to help with the non-profit, trying not to become over involved, staying distant from the person I am having issues with, talking with my husband about what is going on, and got the ok to go back on anti-depressants.

Here is the deal: the anti-depressant has toxic reactions with 3 other medicines I am on. My nephrologist and general practitioner have approved it for my use and I've been on it before. When I was on it, it caused a lack of all emotion, I didn't cry for 6 years even through deaths of loved ones, and didn't get really happy either. My doctor warned me that could happen again. Off it, I experience emotions and get teary at emails. Today, without the new medicine, I was fine.

I saw my scleroderma specialist in March and she wanted to see me again in September and have a repeat PFT and Echo but her staff had left when my appointment was over and when I called 5 weeks ago they said her earliest appointment was November and they weren't scheduling yet, to call the beginning of May. I did and got the same story so I asked to speak to the nurse, explained everything to her regarding the fatigue, anger and appointment and have yet to hear back. I will call again tomorrow. I don't know what to do. I know I have been through a lot lately, things that would cause a healthy person to stress out. I don't know if I should add another medicine to the 25-30 pills I take daily. I can't start taking it until I get final approval from my nephrologist about the dosage and timing with my other meds. I am wondering that as things calm down around my home and my personal life if I will really need it. I am the one who requested it.

I need some guidance. No fancy fonts or emoticons in this one. You are my "go to" experts and have been through the years. Thank you in advance,

miocean
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#2 Buttons

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Posted 06 May 2011 - 02:43 AM

Miocean, I am so sorry that things are so difficult for you and just wanted to say that I am thinking of you.

When I was very stressed and depressed a few years ago I took up Tai Chi and that included doing breathing exercises which I found really helped me to relax and calm me down. They are not meant to cause any strain on you because you do them at your level to suit you. If you want any simple ones to try send me a pm.

Take Care

Buttons

#3 Amanda Thorpe

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Posted 06 May 2011 - 04:14 AM

Hello Miocean

You should write a book and I mean that seriously because the emotional impact of being ill and getting better is often overlooked and doing so could be a cathartic experience for you.

I don't think it's healthy to medically suppress your emotions entirely and having done so for so long it's not surprising that they've come out all mangled. You're not used to feeling so feeling is overwhelming you. I am a great believer in talking treatments, counselling, therapy or whatever you want to call it, and recommend this but for it to work your need to be able to access your emotions and you can't do that if they're medicated to the point of coma.

You've been through so much to physically survive and should now have a life as full as possible but if you're not feeling anything you're only living a half life. Sure it may be easier because you avoid the negative emotions but you also miss out on excitement, joy, hope and love to name but a few.

As for the fatigue, I hear ya! I recently ditched pain patches because I was only awake for about 6 hours a day and that in 2 hour stretches. Nevertheless fatigue is still a huge problem for me to and I just have to accept, as do those around me, that I need lots of sleep and rest. Today I got up at 10:00 a.m., amazing trust me, but will have to compensate for it by going back to bed this afternoon for at least 2 hours. I only got up because the district nurse is coming and I need to discuss a few things with her, normally I literally get out of bed for the visit then go back to bed after it. I can easily sleep until 2:00p.m.

It's great that you want to be involved in charitable work and I believe that doing something positive with our illness is essential, but and it's a big but, you must not overwhelm yourself. You've got the issue of reacquainting yourself with your emotions so you don't need someone else's issues and believe me the problem you're having with the person in question is their issue not yours. You may need to step back from being so involved for awhile especially if you choose not to go back onto antidepressants.

You've taken the time and effort needed to restore yourself physically and you now need to take the time and effort to restore yourself emotionally.

Take care and keep posting.
Amanda Thorpe
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#4 erika

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Posted 06 May 2011 - 05:12 AM

Dear Miocean,
If I were you I would try not to take antidepresives since they interfere with other drugs you are taking. Easy for me to say. But consider that you have been in such a stressfull situation during previous months (moving is one of the most stresfull situations in our lifes). If you have managed that without antidepresives (did you - I didn't catch the moment you stopped to take them) now when you are back home there is a chance that things will calm down. Especially when your health is so much better.
I have been on Xanax high doses for few years because of the pressure in my chest (allergy, food intolerance etc.) and my doctor told me that there is no chance that I quit taking that and that I should go to "drug quitting section" in the hospital. They prescribe alternative drugs for taking of certain medicines. However when the situation with my chest improved I decided to quit antidepresive myself slowly decreasing the dose. It took me two years to stop completely. Maybe your quitting was too fast.
Maybe a good relaxing massage might be benefitial. Also consider some relaxing therapy as Buttons and Amanda have sugested. Maybe some herbal calming tea.
Wish you to calm down and to ask your husband to forgive and to help you.

Erika

#5 miocean

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Posted 06 May 2011 - 08:08 AM

Thanks for your quick replies. You are the best!

I just hung up with the nurse at my scleroderma doctor. She want my most recent labs, which is no problem since I have blood work every two weeks, so I will fax them over. They have put me on the cancellation list and I am waiting to find out what she wants done with the next Echo, whether to have it locally or at her center and when. I asked, "what if I had a crisis and couldn't get in to see her?" and was told to call and she would make a decision based on need. Apparently, she is only in the office 1 1/2 days a week and is in clinic (whatever that means) the rest of the time. Here's another part of the story...when I was diagnosed and going through the crisis that caused the coding and subsequent renal failure, I had seen her once and was using a local rheumatologist. HE was concerned about my kidney function but felt his hospital was not the place for me since they knew nothing about scleroderma and it took him 2 days to convince her to admit me, then, when I was re-hospitalized locally one week after being released I called and asked to be brought to her center and she refused! She is the leading expert in the area,, and I am also able to get to Dr. Wigley in Baltimore. There is also a center in PA I interviewed at and like the doctor there but determined it was too far away for immediate help. I've just been too sick over the years on dialysis to do more than go through the motions but want to be more proactive, especially since lung disease is the leading cause of death now. When I was diagnosed, kidney failure was and I really thought I was going to be dead in 5 years, it was only through this board that I realized the internet was not accurate with mortality.

I have taken Tai Chi, Transcendental Meditation, yoga, been to counseling for overeating and grief, but the best therapy for me is the beach and I am heading there in a little while to chill, probably literally because it is sunny but not that warm today. :)

I am going to hold on the anti-depressant for a little while. Is it time to fire my doctor or at least seek a second opinion?

miocean
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#6 Jeannie McClelland

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Posted 06 May 2011 - 08:10 AM

Honey, I am so sorry you are going through all this. I could say all sorts of things about medications (and medicating), but you already know them. I'm just going to say you do have real friends here, folks that care a great deal about your welfare, and even, dare I say it, are fond of you no matter what your mood. Please take care of yourself.
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#7 Joelf

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Posted 06 May 2011 - 09:21 AM

Hi Miocean,

I'm so sorry to read your posts; it's hardly surprising that you feel so bad after all the things you've had to contend with. A lesser mortal would have crumbled a long time ago, so it shows how very strong you are!

Part of the problem with this disease is that our symptoms do stablise and to the uninitiated it does appear that we're "cured" but of course this is far from the case.

I'm thinking of you and really hoping that you soon begin to feel much better. Perhaps a lovely spell on your beach will lift your spirits a little and give you fresh hope.

Here's a very large :emoticon-hug: which I hope will help a bit!

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#8 Shelley Ensz

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Posted 06 May 2011 - 11:02 AM

Hi Miocean,

Oh dear. I don't feel I could say anything that you or the others haven't already thought of. It certainly sounds like you've been there, done that, got the t-shirt for everything imaginable. I can't even begin to say what you should do. But I guess it's fair to speculate on what I might do, if I were in the same circumstances.

First, I would clarify the problem, which you have so neatly done in your post here. That is the first step towards overcoming anything and I applaud your approach. A brain dump is the ultimate first step and you have done it beautifully!

Second, I would also seek advice from experts. Which you are also doing your very best to do.

Next, I would diagnose myself with "Serious Overload Syndrome" or SOS, as we say in the trade. I would make a list of three or four of the most important things in my life, and I would set about mercilessly eliminating everything from my life that does not fill me with joy and satisfaction, because whatever the cause, you are suffering a serious lack of joy at the moment, right? We are no good to ourselves or to others if we are not on an even and joyful keel ourselves.

I would put "Rest, Refresh, Relax" at the very top of my To Do List every day. And I can say that honestly, because that is exactly what I have done for years now. I run everything I do past those criteria. Is it a restful activity? Is it a refreshing activity? Does it help me relax? If not, then why am I doing it? Can I delegate it? Can I quit doing it? Can I reduce its stress or impact on me, somehow? I would, without any guilt, put myself first because that is the only way I can be any good for others. I tell myself that insanity is doing the same thing over and over again, but expecting different results. That helps me make new and different choices to break the cycle.

For example, before work this morning, Gene and I took a very leisurely mosey around a nearby pond. Halfway, we stopped for a cup of coffee and shared it on a swinging bench. We listened to lovely piped in music and watched the ducks swimming, grooming, and sunning themselves. I meditated on the reflections in the water and looked at the pattern of the waves after a duck landed. It neatly fit all my criteria for "Rest, Refresh, Relax" so I also enjoyed a wonderful sense of achievement, whereby I could knock off my 3 major To Do's and reflect on that inspiring time, all day long.

What would you do differently, if your aims were only to Rest, Refresh and Relax today? Would some items become less important or even fade into nonexistence? Would your nerves feel a tiny bit less jangled?

Face it, the world is going to continue spinning on its axis, even if we are not out there running around in circles every minute of the day. This crisis can be one of the best things that ever happened to you. As you begin to find your center again, you'll be going around in fewer circles and you will select everything that is necessary to live a better, less frenzied, more "YOU" life, from here on out.

I see more beach time in your future, as well as labeling each shell on the sand with your worries, and throwing them out to sea. You're wonderful, you're strong, you're beautiful, and you have fought long and hard for a second chance at life. I am absolutely certain you will find all the resources and help you need to sort this all out.

:emoticons-group-hug:
Warm Hugs,

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

#9 debonair susie

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Posted 06 May 2011 - 11:46 AM

Hi miocean,

You and All have neatly tied the package up and put a bow on it! I'm so proud of you and everyone for how great you are at doing this :emoticons-group-hug:

Full plate (of what you have had going on in your life) for quite some time...would be an understatement, obviously!

However, you have tackled this in the right was and are a great advocate for yourself...Kudos!

Being the Big "Wonderer" that I am...Would it be possible for you to get in touch with a dr with whom you have the utmost confidence and who you feel would have the most POWER to pull something off, (like making the earth move!)or like the ability to phone another of your doctors and make things happen? (If I were in your boots, that's another direction I would take).

As your Friends/Sclero Family (here) have already reminded you of, we care for and about you and are crossing our fingers and waving that magic wand to help things happen for you.

We have heavy hearts about this, but feel confident that because you have such strength and internal fortitude, that you will get these doctors lined out and things will calm down for you.

Thank you for updating us and please, please keep us in the fold as to how all is going?
Special Hugs,

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#10 Sandy B

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Posted 06 May 2011 - 01:04 PM

Hi Miocean,

So sorry you are having such a hard time of it at the moment, but don't beat yourself up too badly for some of the emotions you are feeling right now. You have had such a roller coaster ride over the last few years, getting over one major health problem after another. Not sure about the antidepressants right now, have taken them myself before in the past and although they give your brain a holiday from yourself, I feel the only sort of holiday you need right now is a complete break from all this work and worry, a couple of weeks away would probably do you the power of good. Like Shelley has said, you are probably suffering with a serious case of overload, so definitely need some you time.

I hope you find some peace of mind soon and send you hugs, spoons and best wishes in your search for a speedy solution.

Take care

Sandy B .

#11 enjoytheride

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Posted 07 May 2011 - 01:13 AM

I was writing a long and involved reply to your post when the power went off. So I'm taking it as a hint to keep it short.
Maybe you have a pharmacist who can go over your medications and help you group them to minimize side effects? I know that some of the pills I take make me have to get up many times a night which of course makes me feel really tired. Changing when I take what pills has helped lessen that effect.
Otherwise, if you are not satisfied with your doctor, then a second opinion is never out of order.
Oh and put some sand, a seashell and some ocean water in a bottle and take it home with you. Then you will at least have a reminder at home of what you love.
(((hugs)))

#12 miocean

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Posted 07 May 2011 - 08:05 AM

I am taking everybody's advice. Yesterday we went to the beach and we're going again today. My husband got up early and has been painting. The boxes will still be here. Life will not come to an end because my house is a mess. I don't have to do everything at once. I do no have to be perfect.

:emoticons-group-hug: See, I'm doing better, and no meds! :emoticons-group-hug:



I think I will seek a second opinion. I've been considering it for a while now. Just which doctor is the question now.

Thanks and off to the beach I go!

miocean
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#13 Margaret

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Posted 07 May 2011 - 02:26 PM

Hi Miocean ,

I'm late in responding to this but just wanted to say that you're in my thoughts. Depression hit Gareth hard when first diagnosed with Sclero/UCTD. I would have to say that depression and fatigue are the two biggest battles that he faces since diagnosed. He's on a low dose of anti-depression med now and the doctor won't take him off it for fear that he regresses into another severe episode.

Take care, Everyone.
Margaret

#14 Snowbird

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Posted 07 May 2011 - 07:09 PM

Hi Miocean

I'm a little late on this one but was happy to see that you actually had a good day at the beach with your husband and are going for another especially after all you've been going through. Definitely go for another opinion if you have even the slightest inkling that you should, it's that good intuition of yours telling you to do just that. You're in my thoughts too.
Sending good wishes your way!

#15 janey

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Posted 08 May 2011 - 10:12 PM

miocean,
I've read through all the post and really have nothing to add except for a lot of big hugs (((((((((((((((HUGS))))))))))) You definitely are suffering from overload so as the others have suggested, please drop some or all of the chores and commitments that "nice to do". You need time for YOU. You to put the wonder woman outfit in the closet. Also, please get a second opinion! I don't have any personal experiences with the doctors you mentioned, but from what I've seen on the internet and on this site, their both are scleroderma experts and very UP on the newest findings about scleroderma. I would think either of them would fit your needs.

We are definitely here for you Darlin! Please keep us informed on how you are doing.
Janey Willis
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#16 Sweet

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Posted 09 May 2011 - 10:39 AM

Awwww girlie :sorry: My heart is with you. :emoticon-hug:
Warm and gentle hugs,

Pamela
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#17 miocean

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Posted 11 May 2011 - 11:24 AM

Well, I've take all of your advice to heart and here is where I am right now;

I have a call and email in for a consultation. I had a PFT test yesterday and was very scared because I thought I might have to go on O2 again as I have been short of breath, but my blood oxygen level was 92%, my total lung capacity is 65% and my diffusion rate is up to 45%. I discussed a second opinion with my local pulmonologist and he suggested I see a lung specialist he knows at my scleroderma center. He personally called him and discussed my case. I just made an appointment for June 3rd!

I made an appointment for next week with my counselor. I am holding back from the non-profit that was causing so much stress, still doing my job but not getting overly involved.

:thank-you-2: So thank you all, my scleroderma friends and family. :thank-you-2:



Now, if all the boxes could be magically unpacked and all the paintings on the walls...

miocean
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#18 night owl

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Posted 11 May 2011 - 03:35 PM

Hi miocean

I have not had the same problems that you have had with Scleroderma but I have felt very down with lesser causes than you. I have been on prescription medicine at times to help me over a crisis. What helped me was an inspiration.

My father was my inspiration he used to say gardening is very therapeutic. He did the heavy stuff and I found that with his direction I had time out from my condition. I started with hairy end in and Dad helped me and guided me to have some gardening skills, I think.

Time out by going to the beach is a great thing and therapists are great to.

Beach envy back to the garden

Gil

#19 Lynnie

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Posted 11 May 2011 - 06:11 PM

Hi Miocean

I am sorry be it a bit late popping in! I'm sad you've felt low and below par, but, as the others have said you have had more than your fair share of the battle..but today you are winning!. When the pressure goes and your mind and body are not in fightining mode..that's when a form of anti-climax kicks in and you feel like you are crumpling and unable to function.

Please do not be so hard on yourself for that "lost" feeling my love, give yourself license to feel battered and a little bruised it's normal,if walking on the beach or sitting quietly by yourself with a good book..in fact anything that gives you pleasure then allow yourself to enjoy it; it's time for you to re-charge and take stock and "heal".

If medications can help then so be it, it's all in your hands to choose which road you wish to travel, but we are all here to listen, help and support you were we can, never forget we share each others battles the highs and the lows and at some time we all feel as you do.

Keep smiling ok and here's a warm hug from me :emoticon-hug:
Lynn

#20 miocean

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Posted 12 May 2011 - 09:49 PM

I just wanted to let you know I am doing better without the medication. :VeryHappy: In addition to the counseling session Monday and the appointment with the lung specialist at my center June 3rd, I have been able to get an appointment another scleroderma expert for June 10th! :emoticons-yes: Now I just have to gather my medical records. I have copies of all tests from 2010 to now, with the CT Scans from 2008 until now. I will be able to get copies of a few other things I need, I don't think it is necessary to go years back. I haven't kept all my records, when I was on dialysis, they kept all my tests, which had to be done yearly, and would forward them to the transplant centers so the first place I will go is my nephrologist, who has yet to computerize and I know I have 2 files about 4 inches thick there. My primary has things and so does my cardiologist.

Do you keep copies of everything? My blood work alone for the past year would be pages. How do you manage your files? I have a friend who kept everything, yet she was unaware of a standard test they run after a kidney transplant (BK virus), 3 years out said it had never been run on her, yet she goes to a center that specializes in that virus. :emoticon-dont-know:

Thanks again,
miocean
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