Taming the Fear That Scleroderma Brings
It’s two days before I have surgery as a scleroderma patient, and because I have endured one total knee replacement already, I unfortunately know what I am in for. However, in the lead-up to the big day, I have had a visit from an unwanted guest … a familiar, nasty and oppressive little monster.
I’ve experienced the presence of this entity on a number of occasions in my life, and increasingly so since having scleroderma.
That unwanted guest is fear.
Fear can be a powerful menacing presence. I believe it underpins many negative human conditions and actions: anxiety, depression, low self-esteem, acts of violence, bullying — the list could go on.
When confronted with the kinds of procedures I must face as a scleroderma patient, it is fear that warns me I am about to undergo something that might be painful or uncomfortable. That’s OK. After all, if the fear monster didn’t visit from time-to-time with warnings, I’d be doing really dumb things, such as running into the middle of a busy road during peak-hour traffic just for fun.
Clearly, fear can be useful, especially in life-threatening situations. However it can be overreactive, and in these cases I can enter into some negotiations with the monster itself. But it is important that I come to an acceptable understanding, thus alleviating myself of a lot of the dread and, consequently, managing the situation.
I knew I’d feel frightened about the surgery. It’s a painful operation, and I will need to be brave. So I couldn’t understand why my normal little fear monster somehow managed to organize a full-blown party for him and about a hundred of his mates; complete with raging music, copious amounts of alcohol and naked dancing. I had become completely swamped and overwhelmed by the whole thing, and it was consuming me. It is pretty difficult to negotiate with a full-on, out-of-control fear party underway.
It’s taken me a day or two to work out what was going on. It seems that a party had been organized to draw my attention to something about this surgery.
While the operation is painful and takes a long time to get over, I’ve realized that this isn’t what I’m most afraid of. The monsters are trying to warn me about an insidious phenomenon that, I now realize, occurs with many aspects of life with scleroderma — and it’s tied up with having a rare disease.
You see, many people — including a number of medical professionals— don’t understand the disease or the reality it entails for patients. Major surgery for those who are well requires stamina, bodily strength and the ability to heal. But for me, just getting over a simple cold can take weeks.
People with scleroderma simply can’t do things as easily as their healthy counterparts. They need more time to heal, and things are invariably more complicated. They are complex individuals with complex needs.
Those of us who are fighting battles with our immune system cannot achieve the same goals as those who are not. Those with little or no understanding of scleroderma don’t understand the complex differences and challenges the disease presents. This can lead to unfair comparisons in progress between healthy people and scleroderma patients. This, in turn, invites feelings of shame and isolation for the patient.
So there it is. I’m very frightened of being shamed for not being able to recover as some others deem I “should.”
Having gained an understanding of what’s going on, thankfully I’ve managed to break up the party, send the uninvited guests home, and reason with my own little monster.
I shall use my own measure to achieve the best outcome I can, not the measure of others who don’t fully understand me. I refuse to be shamed because of their irritation as to how I recover as a scleroderma patient. This isn’t a competition, it is my own challenge that I will overcome in my own time.
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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Kathryn
Beautifully written. Thank you.
Kim Tocker
Thanks so much Kathryn :)
Susan Meister
Thanks for posting, wish I had read it before this past Monday when my angiogram was about to happen! interesting take on the fear thing, i too was having a fear party, fear they couldn't find a vein to get blood from or put an IV in my already thick skin, fear that they would actually find something wrong with my heart and then have to do that 'big' thing. Even in the operating room fear that they were not taking me seriously about how cold I was and what that could mean! ugh...well, I did get through okay, but afterward all the stress takes its toll and I slept most of the rest of the day! Again thanks for posting so others can be aware.
Kim Tocker
Thanks Susan...I hope you're feeling a little better now after your procedure! I can totally relate to your experience, and it's so very hard to advocate for yourself when under such stressful conditions! But well done you for getting through and I hope your results have been helpful.
M Whittaker
Kim, This is a very interesting article and it is very true that scleroderma patients can't do things or recover from illness as well as healthy patients.
I was diagnosed with scleroderma while in hospital in 2014 for 2 months, I was bed bound but a couple of the nurses thought I should be able to walk to the loo, unfortunately my legs were in a bad way. I looked reasonably healthy, when I was discharged one of the nurses came over to see me and apologised to me and said she had no idea how ill I was. I told her not to worry, but told her that you can't judge a book by its cover. I have progressed to a walking stick now and have managed to strengthen my leg muscles. I had a tooth extracted in hospital 6 months ago and my recovery time took a while, nothing is straightforward.
Kim Tocker
Hi there Margaret
Thanks for your comment, I totally agree. Everything takes longer and I always try my best to educate and prepare any medical staff that end up working with me about how Scleroderma affects my recovery....I'm getting a lot better and more assertive at doing this for sure!
Heather milligan
Great article. Best wishes for your surgery. Heather
Ann Jackson
I so enjoy your contribution to this and other articles, its so encouraging to know others feel and experience the same feelings and fears .it's sad to know so many others have this awful illness but also forgive me so good to know I am not alone. I pray for a cure to be found soon to end our suffering. Hope you make a full recovery soon
Kim Tocker
Hi Ann, thanks so much for your comments. It's just such an awesome thing to hear from readers, and get that feeling on unity, despite the fact that such a nasty disease brings about this "togetherness". Hang in there my fellow Scleroderma Warrior!
Aissa Norris
Boy did you hit the nail on the head. I have often had these feelings and I don't want to tell others that what I am about to embark on will be tougher than what they will - for truly no one knows someone else's struggles- but somehow, its true for those of us with chronic conditions. Learning to plan for the long haul of recovery for just about any illness or surgery can be an daunting task but also having our care givers understand our concern can seem to them as though we are seeking more sympathy than deserved. Thank you for writing this article and bringing up the word we hate to use.
Vivian Henry
Kim, I have scleroderma morphea. Can you share what problems you had with your knee replacement. I am scheduled for that surgery. And as you said, most medical professionals don’t know about the disease.
Kim Tocker
Hi Vivian! All the best for your up and coming knee replacement surgery. Here are some tips I can give you: Take in a fact sheet about Scleroderma so the nursing staff can put it in your file. It will give them all the info they need regarding the challenges we face. My local support group had one of these sheets I could print off that they had already organised for the members to take to hospital whenever they had a procedure scheduled, I'm certain your local support group should have one. It covers things such as keeping you warm to avoid raynauds attacks, and how difficult it can be using crutchers afterwards due to painful wrist and finger joints, those kinds of things. If you can't get hold of one, see if you can make an appointment with the nursing staff prior to the procedure to discuss your needs. Also take all your medications clearly labeled in a box with a lid if they require them, or alternatively a list. I would also practice your assertive techniques! As Scleroderma warriors we have to be able to clearly state what we need and because the disease is rare it is often misunderstood. Be sure to have something on hand for a dry mouth afterwards, xylimelts are really good, and plenty of lip balm. For when you get home, have a shower seat pre-organised, and home help or a friends roster! Recovery can be slower with Scleroderma, as it was for me, so prepare for that in advance. Freeze heaps of meals beforehand, and set up where you will spend the day during recovery before hospital for when you get home. Above all, be very clear about your needs to the hospital staff, and get as much written info as possible from your support group to present them with. I hope this helps a little. All the very best - once the knee settles in after surgery (a few months at the very least) it is really wonderful - and life gets better in terms of your mobility for sure - it is worth it even if at first it seems like a big procedure to have to go through. All the very best!
Vivian Henry
Kim, thank you so much for your helpful reply. I had searched the internet trying to get info from a scleroderma patient who has had a knee replacement. Yours is the only one I found.
I pray that your second knee replacement went well. I still have not had my knee replacement yet. I guess I am very fearful. What was different about your replacement because of your scleroderma?? Did healing take much longer?? Did you have much more scar tissue than other patients?? Did you have more stiffness??
Thank you in advance for a speedy response. My surgery is scheduled forNovember.
Kim Tocker
Hi Vivian. My second knee replacement went a little better than the first. The reasons for that was because I was more prepared for the recovery period, with my home set up before I arrived home from hospital, and I also ensured the surgeon gave me some very strong pain relief to use at home afterwards. I also suffer from Fibromyalgia, so my brain tends to experience pain to a greater extent. In answer to your questions, I think the difference with being a Scleroderma patient was that the recovery period takes longer because your body is already fighting against itself in terms of the autoimmune disease itself, so energy isn't as readily available to use for the healing process. I also think that because of this, my pain experience was worse, and I was extremely tired for many weeks afterwards. Additionally, painful joints and tight tendons made things like using crutches (think wrist and elbow joints) painful, and doing some of the physiotherapy for the knee was more difficult as the tendons are already tight so that increases pain as well. Scar tissue hasn't proven to be a problem, and my surgeon confirmed this. He had done knee replacements for other Scleroderma patients and said he hadn't noted any issues with scar tissue problems. I think the healing process was about normal, but the recovery process was definitely longer, because of the issues I've outlined above. My advice to you at this stage would be to try and do as much physical therapy to build up your muscles etc around the knee as possible, in the form of a stationary bike if possible. This will really help you manage the physio afterwards. In terms of physical therapy afterwards, the hydrotherapy pool doing aqua jogging was very helpful (but only after 6 weeks has elapsed, healing had occurred and my surgeon had approved that) and I found that while doing the physio straight after surgery was challenging, I used a TENS machine while I did the exercises, which helped me to tolerate it a lot better. With all these options in mind, now would be a good time to organise things like a TENS machine, try it out and see how it works, investigate your local hydrotherapy pool, organise to get some arthritis friendly swimwear (that are easily removed afterwards) and someone to go with you to the pool, set up your home with a shower stool, toilet seat (lower to get onto the toilet is difficult to begin with) and most importantly try to build up your leg muscles now, using an exercycle if thats possible for you. Also plenty of ice packs at home for afterwards, and look into your best pain relief options. Personally I am a fan of CBD oil but not everyone can access this, or wants to use it. But I most certainly needed some pretty strong pain relief for the first few weeks after getting home, and used some strong opiates prescribed by my surgeon. I weaned off these as soon as I could, and the CBD oil helped with that, plus panadol. Feel free to email me and keep me posted on your progress!
Vivian Henry
Thank you so much again for the helpful info! Will let you know how I make out.
Vivian Henry
Hi, Kim
I had my knee replacement on Nov. 16. The surgery was successful and I am doing fine. Thank you for all your helpful info and tips.
Vivian
Alma C Alsip
I really appreciate the facts in these comments. I have Scleroderma, and a host of problems and pain with it, because I don't look ill people don't seem to understand why I can't do certain things and have trouble with others, being 74 doesn't help either. I need surgery on my feet but my podiatrist refused because he knew of a case that ended with amputation .
Thanks for sharing.
Donna Kajfasz
Thank you so much for your article. I had just come home from PT (had sever end stage osteoarthritis in both knees, I have Systemic Scleroderma and my surgery was on January 5th for the right knee) and I was really in the dumps thinking I am never going to get this leg straight and thinking I am a failure because it is not as straight as my therapist wants. I began to cry and tried to tell him, I do not heal like other people and my leg may never be completely straight and my objective through all of this was to be able to walk, which I can now. I think he understands now, maybe. Your article proved to me that I have been thinking the problems I am having could be due to this disease which many people just do not understand....SO THANK YOU!
Aretha Ogans
I have Scleroderma, and found this site, and have enjoyed readying these good true-life comments, so compelling and very insightful. Thanks for the encouraging comments, this lifted my spirit, I am contemplating a shoulder replacement surgery, and the comments have helped me a lot. I will report back in after I decide on which route I will take with my shoulder.