Fearful of upcoming routine appointments?

I have had CREST and Systemic Scleroderma 12 years with just cold from Raynauds. Now progressing internally faster. In my GI "Constant Contactability." Its that time again to have appointments Lung Function, Cardio, etc. I'm so fearful literally. How do people deal with upcoming appointments when you know there is a change? Love to All.

[mar47]

I'm also a sufferer of Crest, now called sclerosis, I also have g.i. problems and recently having problems with breathlessness, I am also having a heart monitor on for a week shortly, it's hard when you know things are deteriorating and I do feel scared especially when I have to see the hospital, take care

[Hidden in reply to mar47]

I am 46 I live in the US. I tease the drs all the time that I should work here there and be on the payroll. My father had Multiple Sclerosis and was in Vietnam. The government did a study on the kin of those sprayed with Agent Orange like my dad was in Denang. However that all went away. So growing up with a sick parent I saw and did so much. I grew up fast. Plus I grew up pretty much in NYC hospitals so I am aware of too much. I am generally a really happy person and laugh all the time. It is just when I see my boys ages 14 and 19 it hits me hard.

[tanya1981 in reply to Hidden]

Try not to obsess too much about what it might be.. and your boys will grow up to be proud men and sons of a happy and caring mother. You’ve had the disease for 12 yrs already and it has only

Very slowly progressed.... that’s very likely

Going to be the case going forward as well... so many people even in this group are on tons of medicine and still live a happy life... you’ve got

A long Way ahead of you xx

[trunchalobesity]

Hi I’m 50 years old and have had scleroderma for 17 years. I have lung, oesophageal, stomach and bowel involvement. Recently my heart has been playing up and I’m having a heart monitor fitted in my chest.

When I was first diagnosed my disease was advancing rapidly in my lungs and was told with 3 children under 3 that I may only have 3 years. That was obviously devastating news.

How do I cope? I had aggressive treatment, took any treatment advised despite side affects. Became my own advocate and expert. Pushed for early and frequent appointments. Went to all the group meetings, listened to experts and increased away.

But the number one thing is to have positive mental attitude. Believe you will be ok and do everything you can to make that true. Exercise, sing, good for lungs and well being. Eat properly and well.

Listen to your Dr, you are unique and they are experts. Get 2nd opinion if you need to. Take your meds every time on time.

Love your best life and have fun. Enjoy your appointments. I meet my girls all now at university at my specialist hospital, the QE in Birmingham. Make it part of your life and enjoy it. We have lunch and they are my second eyes and ears.

If I go to my lung hospital The Royal Brompton in London, one comes too. We look at the museums or combine with a show or river trip. It makes me look forward to my appointments and look forward to seeing how they can help me next.

I’ve been on prednisone for 17 years, my wonder drug for lungs has been mycophenolste motelief, I take ranitidine and lansoprazole for reflux, also the bed head is on bricks. I take movicol to empty my bowel and metoclopramide to empty my stomach combined with an antibiotic on a regular basis with breaks. I’m on a rolling regime of antibiotics with breaks to prevent resistance for bacterial overgrowth in my stomach. Codeine on a night for bursitis of my hip with 6 monthly injections. And hydrochloroquinine for my joints.

Even that’s a team effort with my adult kids when home fetching new boxes and mixing my solution, it’s been a bit of a game for them.

Please be positive, sending love and best wishes across the ocean to you x

[Hidden in reply to trunchalobesity]

Much love and admiration to you for being so positive, thats the way to be and im sure it helps. We have to enjoy the life we have and make the most of it. 👍❤️

[marilynmcl in reply to trunchalobesity]

Sorry to be a grump but mycophenalate is not working for me anymore as my respiratory consultant informed me a few weeks ago. I have progressed in my lung damage to idiopathic pulmonary disease and the drug that is needed to 'slow down' the progression is too expensive to give unless he gets permission to prescribe it...so far have not heard from him so assume it is going to take a while before it is permitted or disallowed.

[tanya1981 in reply to trunchalobesity]

Amazing story... your resilience is inspirational! Keep up the spirits and bless your family

[trunchalobesity in reply to tanya1981]

Thank you,, sending love and prayers to you too x

[Gmargs]

I don’t think you can ever not fear or feel anxious about upcoming appointments especially if you suspect progression. As you may know most routine checks (usually annually) are not too invasive. So I’m guessing your question relates to the results and outcomes. Some comfort can be in knowing any early changes may be treated less aggressively or before more damage is done [if treatment is successful].

Find someone or others who you feel you can tell your concerns/fears to. They may not have the answers but at least someone knows what you’re going through and let them know your not copying well. If you can afford it ($!) you may want to discuss your fears with a professional (I personally can’t afford that, so I try to manage my feelings etc., myself and by talking to a small number of close family members and occasionally my general practitioner (again GP can cost, so limit this). Reading other comments on this site also helps because you know you’re not alone.

The disappointing thing I feel is that not enough professional help and practitioners know enough or are aware of Scleroderma and related conditions to fully understand or treat their patients/clients many variable symptoms, they therefore find it difficult to understand the many issues we face physically and emotionally or find it hard to believe we have so many issues to deal with (which can be very time consuming for the treating practitioner and patient alike).

To make it even more difficult to treat there is still so much not known about these autoimmune conditions and best treatment.

🍀 Hoping for good news outcomes for your next appointment.

Stay strong, be in control of your condition, get as much personal health information about yourself to fully understand your condition and so you can share it with others on your medical treating team.

[Sanmateogirl107]

family support tell your family what is going on and say i ned your support. ask them to go with you. i have crest syndrome, lupus. but i also have been diagnosed with platybasia and chiari malformation-1 when i have to see the neurologist i get terrified. i do not like being alone. so i understand. see an immune doctor and a pain specialist as well. i am there with you giving you love, support, prayers. love julie

[Debbiedoughnut]

Try not to worry as this does not help and the results will just help you to keep up with the situation, stop wondering and listen to the people who know the . next move forward to help you. If you don't understand your doctor don't be afraid to ask. It saves a lot of wondering and worrying after. Love Debbie.