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millerscrossing

New to the Forum and Scared

30 posts in this topic

Hi,

 

my name is James and I have avoided this forum for the last couple of months because I am so scared of the info I will find here.....

 

I have been tested positive for the sclero protein or whatever its called, and I have interstitial lung disease which the doctors originally diagosed six months ago as possible wgeners disease...

 

However, my rhematologist is of the opinion that I have diffuse scleroderma that is attacking my lungs.....

 

I take oxygen at night - and am out of breath unless I am sitting down...Some days are better than others.

 

I am 34, and my doctor told me she could not tell look me in the eye and say that I would see 40......

 

Am on 2000 mg of CELLCEPT, 5 grams of steroids.....(down from 60 mg over eight months) have put on 80 pounds, went from 220 to 307 and yesterday I started a diet......

 

Of course doing excercise is really difficult for me.....but I will try....

 

Anyway, I have taken the plunge and joined this forum.........I dont really have too much family support, my wife bailed on me a couple months ago - when the going gets tough - those not in love pack their suitcases.......

 

I have two wonderful cats who are like my children to me.....other than that a couple of extremely busy brothers ands sisters who do their best to help when they can which is very limited.......

 

So I am reaching out here..cause the depression I am in in not good at all...I am on meds for depression, but have never been in this situation - so alone and everything so much of an effort...

 

Eight months ago, I was swimming sixty lengths a day....now, getting out of the car takes a big effort......

 

If I sound like I am feling sorry for myself ,I guess I am .....

 

Kind regards

 

James

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James,

I wanted to welcome you also. I am sorry to hear that you have had such a hard time and that your illness has made you feel alone. You are definatly on the right track by taking extra care of your health in order to feel better. It is so important to savore the little joys in your life, (your two sweet cats), that make you smile each day!

 

I always smile when I read how others find a way to cope with this illness. You are all so strong in different ways and I am so glad that you have chosen to share your experiences with us.

 

Glad that you joined!


*WestCoast*

 

********

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Hi James,

 

Welcome to the Sclero Forums. I'm so glad you decided to post. I'm so sorry for the huge change in your life over the past few months. You came to the right place for a listening ear and to find people that TRULY UNDERSTAND what you are going through. Not to mention all the great information that helps us learn even more about our disease.

 

I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi James~

 

I am really glad you decided to post. You are NOT alone. There are so many wonderful and caring people here. I am sorry to hear the past few months have been so difficult for you.


Take care and stay warm,

 

Michelle

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James,

Joining this forum just after I was diagnosed has helped me more than anything so I think you will be so grateful you joined.

 

The initial diagnoses is very scary, then you have to face the changes it causes in your life. Not only are the people on this board here to help you face your challenges, you can get the best advice. There is always someone who has had a similar experience to yours. A lot of us are facing personal issues like yourself, so we understand that aspect of it too.

 

We have a lot in common. I have diffuse with interstitial lung disease, am on oxygen, take Cellcept and my dogs keep me going.

 

Have you seen a scleroderma expert or a regular rheumatologist? I was diagnosed by a rheumatologist but he referred me to a specialist so maybe you could consider that if you haven't already.

 

Good luck on that diet. I am trying too and I hate it!

 

Take care,

Jennifer

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Hi, James and welcome to the ISN Sclero Forums. I have split your post and its answers from the Getting to Know You thread as you have touched on so many things of general interest to other forum members. I do hope you will take the time to do another post in the Getting to Know You thread telling us a little more about who you are. If you want, you can just make a simple post and I will move the bio information from this post for you.

 

As you have found, this disease can be overwhelming and even relatively simple things cannot be addressed without the whole system being taken into account. Everything is a Catch-22 situation. Obesity causes many problems, but it is difficult to lose weight without exercise. Exercise is good for us, but so many things have to be taken into consideration. Water exercise is easy on the weight bearing joints, but water temperature and exposure can bring on Raynaud's attacks and the chemicals in the water can dry out your skin. You need the aerobic benefit, but you can't breathe well enough to get it. I am finding that dealing with these things requires micro-steps: change one small thing until you have it under control. Feel good about that then move onto the next one. If you try to do too much too soon, you will be overwhelmed and give up, causing a rebound to the bad habits we are trying to change. Everyone has given you positive and valuable advice, though some of it may not be suitable for you. First of all, make all changes with the supervision of your doctor. As a person who lives with the computer, I have found that the best way to get control of your diet is to use a computer based program. Get to know everything you put into your mouth and make sure each gram is something that will provide for your needs. Don't try changing anything right away, but log everything. You will find that once it is all spelled out for you, you will begin to see patterns that you will choose to change. Some people need a diet plan for a kick start. If you choose one, make sure it is safe and it is one that will fit into a permanent lifestyle as you must make a decision to continue to eat healthy. Exercise is important, but like Shelley says, you must take it in small steps. Work up to doing a little bit more each day. When I was still working, I made a point to get up from my computer every hour and walk someplace else - the restroom at the end of the floor instead of the one near my office. The water cooler upstairs. I took the lift up and walked back downstairs (couldn't walk upstairs). Do mini standing pushups on the kitchen counter. Lots of stretching, finger exercises. The total of activity through the day counts almost as much as a 20 minute sustained exercise period and is much easier to handle.

 

Your doctor should never have said that to you, but you do need to take the bull by the horns and change that prognosis. Scleroderma in itself is not a death sentence, but it will hit you harder if you were not healthy to start with.

 

You have come to the right place, Sweetie. Continue to read and post and take one step at a time.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Welcome James.

You have picked the right place for support and information. I am so sorry that you are so sick. I think it would be great if you could see a scleroderma expert.

Take Care!

Nan

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Hi James:

 

Lost my family in the diagnosis too. I found a lot of help through my psychologist and very close friends.

 

I have also learned from this website, that there is a light at the end of the tunnel. Stress is a non productive condition in anyone's life, and the release of it can work wonders be it in exercise, psychologist sessions, etc.

 

I think the greatest hurdle to overcome, is the fear and in our cases, going it alone without family.

 

What is, is.........once the shock wears off, the gloves come on! One day at a time with an attitude of living life to the fullest.

 

You'll do fine my friend..........such a good group here.........very caring friends!


Tru

 

It is what it is...........

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Hi James,

 

You are so young and rightly should be scared of having so much at such a young age. My one recommendation would be to find a scleroderma specialist since you have it so aggresively. It might help you have an upper hand on this. The specialist can then relay to your local doctor what medicines to take and treatment. Then you have two on your side. This forum can provide specialist in that area. Susie54

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James,

Welcome Darlin'! Like all the other members, we're glad you have decided to post and start sharing and seeking support and informaton. I'm so sorry to read about what you are going through both physically and emotionally. We've all been there at least once or twice and sometimes more.

 

You mention that you are seeing a rheumatologist who thinks you might have diffuse. Did the rheumatologist put you on cellcept or did a pulmonologist? Are you seeing a pulmonologist? With lungs problems you definitely should be. You mentioned that you have to use oxygen at night. Have you been instructed to use oxygen at any other time? I have both PH and ILD. When I'm sitting my O2 sat is in the high 90's but it drops when I start walking. As a result of this my pulmonologist prescribed oxygen any time I "exert energy". When your O2 level drops it really strains the heart, therefore, you need to get the oxygen you need. Please ask you doctor if you should be wearing oxygen at times other than night time.

 

Talk care of yourself emotionally by finding those things that make you feel good and relax you. Getting lost in a good book is a great way to take your mind off things for a while and relax.

 

Please keep us informed as to how you are doing. Again, welcome. We're glad you're here.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Dear James,

 

I think you have done the right thing by joining this forum. I find that tho I don't post often, there is so much good advice and good spirit here, that it's wonderfully supportive and comforting.

I agree that you should see a specialist, a pulmonologist with experience in sclero and a rheumatologist also with lots of sclero knowledge. I've traveled far to get expert consultations and learned a lot of what to do. It's hard to just put one foot in front of the other, moving forward each day, but what else is there to do? It's your life and quality of life on the line, so do your best to be your own advocate and fight for your quality of life. We're all rooting for you.

Annie N

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Hi James,

Welcome to the forum, you will find alot of great people here who are always willing to listen and offer support at any time of the day or night.

 

We all can understand how you are feeling, it takes a long time to adjust to the idea that you have Scleroderma, all of the feelings that you have are normal. I was thinking the other day that one year ago I too was an active person, not by doing any sports but I used to walk everywhere, and leave my car at home.

Now I have problem with SOB and some days even having a shower is a big effort.

 

I am being tested for Pulmonary Hypertension, I was diagnosed with Limited Scleroderma 5 months ago, everything is internal at the moment.

 

Try and stay positive, you will have your down days, on your good days make the most of them. Maybe you should speak to your doctor about anti-depressants to help you get through these tough times, it might make you feel better.

 

Anyway, know that you are not alone in all of this and try and take care.

 

Best wishes

Celia

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hey james I dont think u at all feeling sorry for yourself, some of my family and pals got out too when the going got tough! of course we all get scared of the unknowen, i have been posting here for a little while now I find some useful info on here,i take one day at a time , i get depressed but I sleep alot, so that helps me , be kind to your self james u are never alone I hope u find some peace soon hugs from jaxsxx B)


live life for today and not for tomorrow

 

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Thanks for the messages of support.

 

Yes I am seeing both a pulminary and rhematologist, at least I was in Phoenix....but I recentlymoved to NY and so am having to go through everything again.....

 

Columbia Hospital...I have been told is amongst the best...but it is still so draining...starting all over again...but what can I do - and besides its supposed to be one of the best medical hospitals in the world - so I cannot complain

 

Although I feel that my life is now one hospital visit after another, one catscan, one blood draw, one prescription refill after another, getting records faxed, x rays and cat scans sent , chasing incompetent front office staff to care about why they need to get this record to this doctor by that time...I am sure I am not the only one who has to deal with the $10 an hour syndrome..ie...paying people very little for a job where other peoples lives literally depend upon them doing their jobs properly

 

Do I need to be on oxygen all the time - maybe, I will ask the pulminary doctor when I see him next...I know my rhematologist wanted me to be on it all the time.....I just want to try and put that moment off as much as possible....

 

I have been tested for PH recently and so far nothing came up as indicative of it.

 

Pulminary function test last performed showed diffusion at 72 and capacity at 55 - so moderate to severe is the small talk for the results....

 

I have bitten the bullet and ordered a stationary sitting position exercise bike.....hopefully it will help stem the weight gain and even get a little bit of a natural high......

 

At the moment my depression levels are so severe they are scaring me...I have always had moderate depression, but with everything that is now going on for me, I need to make an appointment asap with a psychiatrtist to evaluate my meds....

 

What else can I talk about..........ok the US health care system..I live in the US, but moved from the UK 3 years ago...I saw the film sicko by Michael Moore - everything in that movie is spot on.....I was crying through ,most of it........and I am one of the lucky ones with good health insurance and long term care insurance...and still I am being financially drained

 

The weird thing about my illness if it is scleroderma is that I have good days where I almost feel normal with my breathing (unless I walk up stairs and then I am quickly reminded) and other days I am almost incapacitated...those are the bad days with the depression, cause I feel I will never get over the very bad days....

 

My older brother is a neurologist and with his limited knowledge of the diasese , cannot understand the swings in my breathing.......

 

I know that stress seems to be a theme ..when I am very stressed out, everything gets and feels worse......today I got a refill a med that helps relax me and my breathing is better and I can face writing on the forum and getting out of bed..........

 

Thanks everyone for listening to me rant

 

Kindest regards to everyone for your support by responding to my post...........

 

James

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Hi James ,

 

I have been reading this thread and want to let you kow that this past spring, my son's child psychiatrist brought in another psych doctor who specializes in autoimmune depression. There is a correlation between autoimmune diseases and depression. The fact that you have suffered from it before may indicate that your meds need adjusting to 'accomodate' the chemical changes from the autoimmune process itself. It was confusing to me since I am not a doctor but the correlation did make sense after he explained it to me. Gareth has been on SSRI's for OCD, but the doctors did adjust his meds because of the UCTD.

 

Take care, Everyone.

Margaret

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Hi James,

Welcome to the roller coaster club where everything physical and emotional goes up and down. It's pretty much the only constant with sclero. But never fear, it can randomly go into remission, or so my rheumatologist keeps telling me. Stress management is very important. Learn to do things to take care of yourself: a nice, calm walk around the park, yoga or something to take the edge off. Before I was an emotional mess, crying, angry - all of which are good emotions but they were controlling me. So to control them I use Yoga & antidepressants. Now I'm happy as a bug. Ya gotta do what ya gotta do.

 

I've been diagnosed for a year now and I'm still being poked, prodded and tested more than ever but let me tell you from a girl who use to scream at the site of needles ya get use to it. They say it does subside after a while but I'm not there yet. I have lung complications too and am now on FT oxygen. Oxygen isn't so bad. Are you on gas or liquid? I love my liquid. It beats the clunky gas tank.

 

If you're not doing so already - keep a copy of the doctors tests and notes for your own records. I too have had problems with tests and notes getting transferred from one doctor to the next. Most of the time I have my tests available so doctors can make copies of my version. It's also good for emergencies. Many people keep binders. I scan my stuff to keep electronic copies on my ipod.

 

Take care,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi James,

 

I am scared, too, like you. I guess it's a pretty normal reaction when you are young (or any age), have never heard of scleroderma before, and suddenly !BANG!, it's the centre of your life.

 

Like you, I have kind of been avoiding the forums for months. I know now they are a great source of support, but opening up to the people here means I have had to face it myself a bit more, and that's pretty tough.

 

I agree with everyone. It's a true rollercoaster emotionally, and for me, the only comfort at all is knowing that that is normal...what I mean is, please don't feel alone. You are not alone, and although everyone's symptoms are different, we are all united in understanding the fact that everyone here can relate to the fears and difficulties you have.


Susie

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Hi James,

 

Welcome. I can't add anything more than what everyone else already has. Just wanted to say glad you found us.

 

I have not yet seen Sicko. I am afraid it will be bad for my health! :lol: (I tend to get all worked up about the issue and would probably blow a gasket!)

 

Hang in there,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi James:

 

My sons bailed on me; family is non exsistent whether thru denial or the desire not to get involved. Don't you bail, don't you give in, or give up.

 

Best site you could be on. I just spent about 20 minutes crying, and it's gone from several days to several hours and now down to several minutes.

;)

Just fight. The mind is a wonderful thing. The exercises you are attempting to do are not as important as the excersises the mind needs to do. Friends have proven to be the "family" that has deserted me. I am extremely fortunate in that this disease has only infected a portion of my exterior body, but I am mentally preparing myself for any future attacks on other areas.

 

Met a great person last night and we hit it off. Began wondering if it would be worth pursuing in light of the situation. Result: Not sure yet, but growing mentally stronger every day.


Tru

 

It is what it is...........

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Hi James

 

I'm 34 too and was diagnosed with limited scleroderma (initially) two years ago. At that time I didn't really take it all in until last year when things started to go downhill with a hypertensive renal crisis occurring (now diagnosed with systemic scleroderma).

 

Yep things are tough to start with, but you learn to love the little achievements you make with great passion. Determination my friend is the best thing you can have on your side. Determination and positive thinking gets you a very long way.

 

Like you I have two beautiful cats who are like my children. Don't know where I'd be without them.

 

I may not be a regular poster on this website, but whenever I do log on, you can always guarantee to get a smile from the posts. This forum is a wealth of information and you realize you are not alone. Doctors speak a lot of jargon which can be very confusing and frightening- this is a great place to sound out your thoughts and get a better understanding of what is going on.

 

Keep up your spirits.

Monika. :D

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James,
I am so sorry for your diagnosis. I know your pain. When I was diagnosed, I was told that I had a 50% chance of being dead in 5 years because of my lung involvement. I have no advice for you other than you should talk to your doctors about having a stem cell transplant. Personally, I am partial to Northwestern's SCT program, but there is also the SCOT program. Or you can have it done outside of a clinical trial. In any event, I was approved for Northwestern's program (make sure you have a good heart) but I could not get insurance to cover the SCT as it is not considered a normal procedure but rather experimental (I have Blue Cross). In the meantime, I have been on the cyclophosphamide IV. I am not sure if it is working but at least it doesn't hurt to breathe. Best of luck. You will get through this. If I find that I cannot control the disease, I will opt to pay for the SCT out of pocket but right now I am on the fence hoping that something will slow the disease progression. Regards Gidget

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James.

One more thing, I lived in CT until recently. While I am sure that the Columbia doctors are experts, I do not recall there being a Sclero expert in NYC -- but I could be wrong. In any event, you will want a sclero expert to direct your local rhuematologist with regards to administering your day to day treatment. So when I was in CT, I went to Johns Hopkins for both the sclero expert and the pulmunologist. They directed my local rhuematologist with regards to what my treatment plan would be and at times we have made slight changes from the recommendation based on my wanting a more aggressive treatment. All my PFTs and BAL tests have been done at Hopkins. I have been very blessed to have great medical care. Now that I have moved to FL for the warmth, I have a local rheumatologist and a local primary care physician "just in case" I need local care as I still fly north to CT and Johns Hopkins. In any event, I am sure you will figure out what medical arrangement works best for you but somewhere you need to be connected with a sclero expert. Regards, Gidget

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Thanks all,

 

amazing responses everyone - and yes, I will ask the rhemy if he can confer/refer with a specialist in sclero......

 

I am having an esophagram I think its called, i am supposed to drink a chalk like substance wjich is the first step in diagnosing if there is any diffulculty swallowing.....

 

I dont know about you, but I would think that putting on 80lbs in eight months should be an open and shut case!!!

 

Thanks to each and every one of you.........my biggest battle right now is the depression more than the diasese....

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James,

 

I'm sorry you are having to deal with depression. Been there, done (and doing) that. I am also sorry your wife has left you at such a hard time in your life. I am also separated from my husband, my chioce however. I didn't need the extra stress he put me through.

 

It is hard being alone with this disease. I envy everyone who has caring supportive spouses. That's one of my greatest dreams, to have a kind, caring, suportive, team playing, committed, life partner. It would take away a lot of the stress and worry and bring comfort, a sense of security and some peace.

 

I started my own divorce support group and it has been a sucess. I have met a lot of warm, friendly, caring people, made some new friends and we've helped each other out a lot. Maybe you could find or start your own support group? I just reserved a room for free in our library, put an ad in the paper and posted fliers. If you're not up to it right now, maybe soon.

 

Take Care,

I'm thinking of ya,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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