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Scleroderma - Ruining My Life!


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#1 DBHYGRELL

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Posted 29 November 2006 - 11:41 AM

Hello,

I feel like this disease is ruining my life. I had plans and no I feel like those plans are a joke. For example, I planned on working my current job while attending school for nursing. I can't go to work all the time because I feel bad. Either I am hurting so bad or my stomach/bowels are acting up or I can't breathe well. Now, I have used up my FMLA leave for the year so I am worried about keeping my job. Without my job, I have no income or insurance. I am not sure how I would be able to work and go to school at the same time next year. If I don't do what I had been planning on, what do I do?

Has anyone else ever felt their lives spiraling out of control like this? I don't feel like my family, friends or work really understand... what is happening to me. I have been already told by my manager to start looking for another job. Will I get better or worse? Who will help me? What about my bills?

Out of control worrying,
Denelle

#2 Sweet

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Posted 29 November 2006 - 12:56 PM

Hi Denelle,

First of all let me give you a big hug!!! My heart just went right out to you when I read your post.

This disease can certainly make us feel confused and angry at times, so most of us here can truly relate to your feelings.

In regards to your work, have you thought about having your rheumatologist write you a note stated you are disabled, and need to be "accommodated"? This means your employer by law has do whatever it takes to make you comfortable at work or give you different work that you can do, adjust your schedule etc. This falls in line with the Federal Americans with Disabilities Act. Type ADA into google and you will find a lot of information on it. Your manager is walking a very fine line by giving you a suggestion about "finding another job". Look this info up, I think it will help you. I’m not an attorney, but I do have a fair amount of experience on this subject. Look into it as soon as you can.

Please take one day at a time, knowing that you have found a group of people here that truly does understand what you are going through.

I'll be thinking of you, post often when you can.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Hailee

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Posted 29 November 2006 - 01:39 PM

Hello Denelle,

I just want to say that years ago when I first became very ill, something happened and it went into an apparent remission. I was able to live mostly normally for 16 years. Although I am very sick now, I did have a life.

I just want encourage you not to give up hope. Maybe things will remit somewhat. In the meantime, don't try and do too much. Like Sweet said, just take one day at a time.

I would like to add that even if you could stay at your job, you may not want to after being treated like that. It's not as though you asked for this. If you can, try and think outside of the box as they say. Perhaps there is a different path that you can travel that will provide you with what you need.

I can't help thinking about a story I read about a woman with dyslexia who became a successful writer. She had been declined so many times and was told that what she wrote was trash and yet she persisted. I wish I could remember her name. Often times we hear of people's struggles and their ability to overcome. The human spirit is truly amazing.

Seek out as much good counsel as you can. Unfortunately, many times, those whom we expect to be most supportive (friends and family members) often fall short and let us down. It is hard for us to reconcile the effect it has on us. Our whole belief system can be shattered.

Take time to think in new ways. Answers may be there for you that you had never thought of before.

Blessings,

Hailee

#4 Shelley Ensz

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Posted 30 November 2006 - 02:30 AM

Hi Denelle,

I'm sorry to hear what you're going through. Illness usually makes demands on all of us to modify our goals and adjust our plans.

Although many of us might expect to be greeted with love, compassion and understanding upon becoming seriously ill, the reality is that most (if not all) of our associates are likely to react strangely -- sometimes with outright denial that anything is physically wrong with us, sometimes with very unhelpful suggestions for worthless remedies, sometimes with a cold shoulder or even fears that we will become dependent on them or a financial or psychological burden; or worse, they secretly fear that we might be contagious so they stay away completely.

Ironically, it doesn't mean they love us any less. We can still enjoy happy relationships with most of them, provided we learn to cut them a ton of slack (drastically lowering our expectations), focus on learning how to ask plainly for what we need without any type of manipulation, and take responsibility for learning how to adjust to the new and startling demands that illness places upon us.

One of our responsibilities is to take care of ourselves emotionally, and to rapidly develop additional coping skills since illness will exacerbate any less than stellar coping mechanisms we usually rely on, bringing our slight human weaknesses to the forefront and making them look more like glaring faults <sigh>.

Thus, if we tended towards a bit of worry before we became ill, we can take it right up over the top after becoming sick. That can add all the symptoms of anxiety and depression to our illness, making us jumpy, grouchy, irritable, and even more fatigued and in pain than ever before. Then we usually show the delightful insight of blaming those around us for not being understanding of our illness, when in fact they are adversely reacting to our own disabled coping mechanisms.

You can see how quickly that can spin out of control in a downward spiral. The only way I know of to break out of that swift long slide is to first realize and admit it is happening, like you have already done, and then to purposefully set about learning new coping methods, leaving no stone unturned.

Typically that might involve a multi-pronged approach, such as consulting with a lot of professionals. We might see our primary doctor to assess whether our anxiety or depression is sufficient to require treatment; a guidance counselor to consider an adjustment in schooling plans; a disability expert to learn our workplace rights and responsibilities; a counselor to help us adjust to the rapid changes and substitute healthier ideas and coping mechanisms; and a support group for extra bolstering.

You might be putting yourself under too much strain by expecting all your plans to go on as usual. Perhaps you need a year or two for the illness to settle down and for you to learn how to adjust to it and compensate for it, before continuing with the plans for school. Perhaps you need to get a school loan and forego working while you are in school. Perhaps you could work part-time and go to school part-time. Just relaxing your goals might be enough to quell the worst of your anxiety.

At the top of my To Do List every day I put "Rest, Refresh and Relax". Then if I achieve nothing at all, I have still achieved my most important goals, which is psychologically healthy in circumstances where you can't always rely on the physical or mental energy to achieve something worthwhile on any given day.

They say it takes about 2 years to adjust to any diagnosis, and in looking back, I can say it definitely took me about 2 years to make the most significant adjustments that enabled me to enjoy a delightfully happy and refreshing lifestyle based on radical simplicity, extreme flexibility, a very grateful attitude, and very carefully chosen goals supported by tremendous lifestyle modifications.

A thought to hold in the forefront is that we must always become bigger than any challenge we face. The bigger the challenge, the bigger the person we must become. So let this be a challenge to you! I am absolutely positive you can make the adjustments...if you cut yourself a lot of slack, seek wise counsel for every aspect of your life, and judiciously (even radically where necessary) redesign your approach.

Sooner or later, it will all come together and you will look back, glad to have had this opportunity to rethink and redesign your priorities and your life. Honest! So hold that thought closely while things go topsy turvy as you explore new possiblities.
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.

#5 LisaBulman

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Posted 30 November 2006 - 02:49 AM

Hi Denelle,
I am so sorry things are going in the right direction for you right now. When I was first diagnosed I thought my end was near and I would never be able to do anything. Yes my plans have changed, I am not in a power position in a large company, instead I am a married, stay at home mom of two beautiful girls who volunteers her time at the girls school on this forum. My life is full, busy but not exactly as I had planned. Sometimes there are decisions that are made for you, you just need to accept them. It is easier said than done. Like Sweet said, you should have your dr write a letter. I was in a company when I was diagnosed and they were more than accomodating. Actually my immediate boss was self centered and could really have cared less about anyone so I went to her boss and he was great. He told me that he would no longer allow me to work full time and that I had to work 20 hours a week for 2 months and then we would revisit my situation then. On top of that he paid me full time for my part time work. Not every company or boss will be this understanding or giving, but everything is worth a try.

Know we are here for you....

Hugs,
Lisa
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#6 janey

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Posted 30 November 2006 - 05:17 AM

Denelle,

I'd like to join everyone else in giving you a big virtual hug! I'm so sorry you are in this emotional place right now. We've all been there so it is something that we all can relate to and totally understand. Yes, scleroderma has changed my life, but I no longer feel that it has ruined my life. Our (my husband and I) future plans are no longer what we had initially intended but we have new plans. Money is tighter because I'm only working part-time, but we have found ways to cut back. I, too, wanted to go back to school, but that is no longer a priority. If it happens great - but right now - it's on the back burner.

When working in my fulltime job, I was always the team leader, in charge, and the person that people went to to get things done. Now I've stepped back and become a member of the team. I've managed to create a working situation where I work out of the house and telecommute and my clients are perfectly happy. If I don't feel like going to a meeting, I call in and join the meeting in a conference call. It took me a couple of years to develop this working situation, but I rigorously pursued it and love it.

Is there anyway you can do what Lisa did and go above your current boss? Do you think there is anyone in a higher position that is more understanding? How about the people in Human Relations? Can they be trusted and can you work with them? Please take some time to assess the situation and the people. You might seek out professional help in understanding the legalities of the situation as Sweet suggested.

Please know that we are here for you emotionally. Keep us informed on how you are doing mentally and physically and how things work out.
Janey Willis
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#7 R'egene

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Posted 30 November 2006 - 11:46 AM

Scleroderma is very overwhealming, but you can't give up. I have filed for disability because I also was feeling bad, having extreme breathing problems. I could barely walk to my desk to the restroom without feeling like I would pass out. My circulation is so bad I can't sit for more than 2 hours or walk for more than 1 hour. It's painful, but if u get disability they will find a job perfect for your conditon and never make u do more than u can. You have to stay positive cause there is no cure and the anxiety will make u feel hopeless. I am on a organic diet My energy is wonderful and my scars are lightnening up. The organic way seems to help me because the steroids, cumadin, paxil, prednisone, and nexium every single day seems impossible, plus it weakens my body. I'm trying the natural way, and it is working for me so far.

#8 DBHYGRELL

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Posted 30 November 2006 - 01:18 PM

Hello,

Thank you to everyone who responded!!! I have been having a hard time lately and it is so easy to get overwhelmed. I talked to my sister, my doctor and my ex's mom and that has helped me see the light. My doctor validated my fears and anxieties- scleroderma is a very serious disease and it is scary not knowing what is going to happen. He also validated my idea of looking into clinical trials as I am refractory to medications so far.

This disease has the strange ability to take over and change your perceptions.

I have a plan - and it is modified, but I feel in control again. I am looking at the trial at Northwestern in Chicago and we will go from there. I am also keeping my eyes open for a new job that will be less stressful.

Thanks again,
Denelle

#9 Sweet

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Posted 30 November 2006 - 01:47 PM

OH Denelle, I am so happy things are a bit sunnier for you today!! *hugs*
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 janey

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Posted 01 December 2006 - 04:36 AM

Denelle,

I'm so glad you are doing better and that you have a plan. That's so important. Here is our link to Clinical Trials. It lists the places and trials that our currently recruiting. The ASTIS Study is one of the one's at Northwestern, but they have a couple more going on as well.

Please let us know what you find out.

So glad that you are doing better!
Janey Willis
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#11 Shelley Ensz

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Posted 01 December 2006 - 01:48 PM

Hi Denelle,

I am thrilled to hear that you have adjusted your plans and are in the process of turning things around. I think half the battle was realizing that you were in a bad spot and being honest and open about it. That opens the door to change, for people (like you) who are wise enough to welcome it and learn from it.

As you've already figured out, we can be bigger than our disease(s) by facing the facts and adapting to them. Kudos on realigning some major things so quickly...and keep up the good work. You are setting a great example for all of us!
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 Sam

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Posted 01 December 2006 - 11:33 PM

Denelle, maybe you an see if you can contact your local BVR. It's a rehabilitation service that each state has to help those who become disabled. I have gone through them and they paid for me to go to school and is helping me find a job that I can do being disabled. In Ohio It is Ohio Rehabilitations Services (BVR). Hope this helps, I to get down about having scleroderma and the other things that is going along with it. Take care, Sam
Sam

#13 jefa

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Posted 02 December 2006 - 02:07 AM

This thread is full of thoughtful and useful advice for Denelle and all of us. I was particularly touched by this quote from Shelly:

Although many of us might expect to be greeted with love, compassion and understanding upon becoming seriously ill, the reality is that most (if not all) of our associates are likely to react strangely -- sometimes with outright denial that anything is physically wrong with us, sometimes with very unhelpful suggestions for worthless remedies, sometimes with a cold shoulder or even fears that we will become dependent on them or a financial or psychological burden; or worse, they secretly fear that we might be contagious so they stay away completely.

Ironically, it doesn't mean they love us any less. We can still enjoy happy relationships with most of them, provided we learn to cut them a ton of slack (drastically lowering our expectations), focus on learning how to ask plainly for what we need without any type of manipulation, and take responsibility for learning how to adjust to the new and startling demands that illness places upon us.


Thanks, Shelley. Much food for thought here.

#14 Sarah

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Posted 13 December 2006 - 09:49 AM

Hi Danelle,
I can definitely understand what you are talking about. It is very normal to feel that your life is totally out of control when everything that we have taken for granted, our health, plans for the future, even emotional stability, has been put into jeoporady. I am sure there are days when eveyone on this site just feels like they got the rug pulled out from underneath them! Not just once, but over and over again in the ups an downs of autoimmune illness. I don't have scleroderma, but I have an autoimmune problem. They are very ard for other people to understand. But if you listen you will find others who deal with chronic illness. It may not be sclero, but they can still be such a source of help for you. I have friends with endometriosis, and herpes and the like that have provided alot of insight into dealing with the daily demands of a disease plus functioning in a non stop world that really values health and vitality over any percieved from of weakness. The other thing I have found is that autoimmune problems actually are vey common, there are people with arthritis (quite common), diabetes, thyroid, MS..all of these are autoimmune and very common illnesses. Speak with them, you can mutually learn from eachother. Personally, I really only talk about my problem with people who have illness. I don't find that other people understand and having a chronic illness has taught me to just focus on what I need to function and get through my day happily and healthily and to just leave the rest. The work issue is hard. I am a stay at home mom, and my son really just doesn't allow me to feel sick much of the time. I have to get up and go even if every bone and muscle hurts. Sometimes at the end of the day I am truely so tired out from him I just cry, but I wouldn't change it for anything. Find something you love! It is healing in it's own way. Sincerely, Sarah.

#15 barefut

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Posted 13 December 2006 - 01:06 PM

Hi Danelle,

Wow, such great advice and support - you came to the right place. :)

I too had to modify my plans when I was diagnosed. I was applying to graduate school to get my masters in education - something I really, really always wanted to do. I have since realized, that was going to be just too much for me.

Now I teach preschool out of my home and it has been very rewarding. I'm looking forward to expanding my class size and days of the week next year.
I know I can still take a class here and there whenever I feel like it.

I always think that everything happens for a reason though we may not know what for or why. But if we just roll with the punches we may be able to find out later when looking back at the path from where we came.

Don't mean to sound preachy but this approach always helps me to cope with life's punches so I don't end up with permanent black eyes :lol: