Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Shoulder operation


  • Please log in to reply
24 replies to this topic

#1 winnie97

winnie97

    Bronze Member

  • Members
  • PipPip
  • 22 posts

Posted 01 February 2011 - 10:54 AM

Hi,

I've been to the hospital today and been told I need an operation on my shoulder for shoulder impingement. I've had two injections, physio and hydro therapy; nothing has eased it, they have put it down to the S word. I'm struggling a bit at the moment; consultant took me off steroids as I had been on them a year and she wanted to give my body a break, still on the methotexate though. I've been fully off steroids since January and since then my aches and pains have come back with a vengence; bursitis on my hip flared up, have to go for injection into that, knees very painful, elbow pain worse. I'm off work at the moment as I can't get any ease from my hip, sitting, lying, standing and walking are all very painful, but I have to go to the hospital for that, as the hip is the only joint that the doctors at my surgery don't inject, so I've been waiting 2 weeks so far for a hospital appointment.

I'm going back to see my general practitioner on Thursday; she's given me some gel to rub on for the pain and also a cream to rub on for the inflammation, but it's not doing very much so no doubt it will be another sick note on Thursday. It's so frustrating having to wait so long for an injection; it's a good job my work is so understanding and know if I could be there I would.

Anyone else have these symptoms or can suggest anything that will ease the pain or stiffness?

Thanks,
winnie97

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 01 February 2011 - 01:41 PM

Hi Winnie,

I had shoulder impingement, caused by bone spurs, for 16 years, and then got a torn rotator cuff tendon. The moral of the story being that it is not wise to lift heavy weights at an improper angle when you are over 60 and have bone spurs that are ready and waiting to chomp on a tendon for lunch.

I had surgery for it six weeks ago. Shoulder impingement is very common, even in otherwise healthy people. My shoulder surgeon removed the bone spurs, shaved off the arthritis in the joint, and repaired the tendon, all in a simple outpatient surgery. After one hour in recovery, my husband took me out to breakfast, but my doctor was shocked by that, so perhaps that's more than they expect. I had a nerve block and was more bothered by carrying around that ball and chain, and my neck really hurt from the sling, so that didn't last out the day. (Please note, I talked to my doctor's office at length before removing the sling, this is generally not a good idea at all, and strict instructions must be followed to the letter to not cause injury without the sling. But, it was necessary because I had a prior severe neck injury.)

I already have much better range of motion now than I did before surgery. Usual recovery is 3 to 4 months, but they told me to expect it to take 7 to 8 months, because of the scleroderma. However I think I am right on track for a normal person and healing very well. I sort of wish I'd had surgery as they wanted 16 years ago, but then again, they have really improved techniques and even anesthesia in recent years, so I'm also glad that I waited. What I did back then was do physical therapy for about a year and a half, and it mostly settled down, with some interesting exceptions over the years.

Icing and gentle range of motion exercises (prescribed by a physical therapist) can really help a lot, and that's what you also need to do after surgery anyway, so (with doctor approval) it's great to get in the habit of it now. In fact, just a few weeks past surgery, they want you to try to control pain only by exercising and icing, and not with pain pills, and I must say, overall it really does work.

Good luck for you in calming it down, and for surgery, too!
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.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 February 2011 - 01:51 PM

Hi Winnie,

I'm very sorry to hear that you're suffering such a lot of pain and discomfort.

Thankfully I haven't suffered with the shoulder impingement that Shelley and you have had to deal with, but I can empathise with you as before I was diagnosed I was suffering similar problems with aches and pains in my joints, particularly my knees, wrists and hands. At one point, I felt as if every joint in my body was painful. :( Like you, I was then put on steroids which dissipated the pain very effectively.

Your doctor has probably discontinued the steroids as they can bring on a renal crisis in Scleroderma ( details here) as well as having other unpleasant side effects and so perhaps she feels you would benefit from a break from them. I assume that you were weaned off them over a period of time; you should never just stop taking them as that can make you feel very ill. Perhaps when you visit her on Thursday you could suggest that she prescribe an alternative anti inflammatory to give you some relief for your joints; we have a LINK HERE regarding other pain killers which I hope will be helpful to you.

Do let us know how you get on with your doctor on Thursday and also when you eventually get your hospital appointment.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 svoss

svoss

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 10 February 2011 - 11:33 PM

Hello,

I also had shoulder impingement surgery in mid December -- turned out to include a couple of nights in the hospital for me. I live in 'no know' land, where doctors are rarely acquainted with the disease. My rheumatologist (who also has little experience with Scleroderma) referred me to the surgeon. During my presurgery interview he stated that he knew nothing about Scleroderma but would 'read up.'

The surgery went fairly well, ended up being a bit more involved than we had originally thought, thus the hospital stay. The day after I got out of the hospital, I began PT, which was challenging and rewarding ... moving along quite well (or so I though)with a 167 degree arm lift (with assistance) last Wednesday.

Last Thursday I saw my surgeon for the first time since my surgery (he'd been on vacation). He was not pleased with the range of movement at 7 wks and returned orders to PT with 'no restrictions.' He also released me to go back to work that day and cut my pain med dosage in half. The 'no restrictions' comment concerned my husband and me, and we asked if there should continue to be some restrictions due to the Scleroderma, to which the surgeon responded "I don't know anything about it but I can't imagine it would make a differece -- we don't want you getting frozen shoulder." OK, nor do I. So we left it at that.

Since my return to PT last Friday we've added strength training (OK), I was progressing well, or so I thought. Movement was increasing every day, number of repetitions increasing, time indurance increasing. The stretching was always a little uncomfortable, but beginning last Friday it became unendurable -- screaming, passing out type 'unendurable.' My sessions have gone from 3 hrs 3 times a wk to 4-5 hrs 3 times a week. My shoulder, pec and biceps are again very inflamed, constantly aching, disrupting sleep, work. I have tried to explain to the PT therapist that my therapy needs to be a little more gradual than the average patient and range of motion exercises really need to be more gentle -- let's get to the goal, but perhaps not as quickly as "all the other patients." The response is that they'll do some research, but the bottom line is that the surgeon has prescribed 'no restrictions.'

I am very interested to know what you all think about this and any suggestions you might have on how to get out of the 'torchure chamber' and back to the steadily progressive PT I had before.

Just a bit of history: I am blessed to have Limited SSc, though I have had 3 surgeries in 18 months -- lumbar fusion, emergency gallbladder removal, and now this shoulder surgery. I have organ involvement (GI, kidney), and joint/muscle involvement, Reynaud's (which has been raging since Fri), Sjogren's. A little on the aggressive side for Limited SSc.

I think being in a medical center and treated by medical professionals who are familiear with Scleroderma is key. I am not in that situation. Winnie, I hope you are in that situation.

Again, any and all suggestions or reference to articles will be greatly appreciated.

Thank you,
svoss

Sorry - should have mentioned that my surgery included rotator cuff repair, removal of the secondary biceps tendon, which was ruptured, reattachment, significan bone spur removal around joint and about 1/2 of bone removal about 6" along clavical. I'm new to this ;-)
svoss

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 11 February 2011 - 11:21 AM

Hi Svoss,

A warm welcome to these friendly and informative forums!

Goodness me, you do sound as if you've been through the mill with your PT, it sounds extremely painful and I'm very sorry. You hit the nail on the head about being dealt with by a Scleroderma specialist as unfortunately many rheumatologists know very little about this complex disease and it hardly inspires confidence in your rheumatologist if he's admitting that he knows nothing about Scleroderma and with regard to your PT they're basically hoping for the best!! :emoticon-dont-know: :rolleyes:

Please bear in mind I have no medical training (I do have a current first aid certificate but that's the extent of my knowledge! ;) ) but I really feel that no amount of physical therapy should make you hurt that much and that the PT therapist is overdoing it and could be doing more harm than good. I'm a very keen member of my gym and I consider myself to be perhaps fitter than the average person even with Scleroderma, but I would be very wary of overdoing it particularly after an operation. However, as I've not personally experienced the operation that you and Shelley have had it's obviously difficult for me to say exactly how much you should be doing. I think I would be inclined to go back to your surgeon, explain the position and your concerns to him and say that you feel a slower and more gentle approach would be better.

Do post again and let us know how you get on.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 11 February 2011 - 01:39 PM

Hi Svos,

Oh my, I nearly died of shock reading about your physical therapy for your shoulder. As you know, I had rotator cuff surgery, with tendon repair, bone spur removal, and polishing (or some such thing) to remove the arthritis there, about 7 weeks ago. This is where our similarities really part ways.

My surgeon told me that normal recovery is 3-4 months but with the diffuse scleroderma, I could expect it to take 7-8 months or even longer. I have a half hour of physical therapy, once a week, which is a review of my progress, passive range exercises done by my PT, and 15 minutes of icing.

I have only 3 exercises that I am allowed to do at home, all of them passive range of motion, and I am only allowed to do them twice a day. This is about five minutes (or less) of arm exercises a day. I also have "no restrictions" but that is a misnomer, because I am only allowed to lift one pound with my involved (right) arm and can only do things that don't hurt. For example, I can try reaching for something on a shelf, slowly, but if I can't make it all the way there without pain, then I need to use my other arm instead.

Yesterday I was told that I am "way behind" for expected progress at this point, and that I need to be more conscientious about controlling pain since uncontrolled pain causes further impingement. So I have to be more cautious when doing my exercises, more careful in my daily activities that might be stressing it, and use medication and icing promptly, rather than avoiding or postponing it too long. I have been too eager to recover, and admittedly overdoing it past the point of pain when exercising and I started using pain medication only as a very last resort instead of as a helpful precaution. So I am busy mending my ways.

We are so many miles apart in treatment that I can't help but think that you might benefit from a second opinion -- and preferably at a scleroderma center or with doctors/PTs who know something about scleroderma. I can't even comprehend 10 minutes of arm exercises, not to mention hours on end.

More power to you, in the interim!

:emoticon-hug:
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.

#7 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 11 February 2011 - 10:02 PM

Have any of you girls had the different colors and different thickness of bands? When I had Frozen Shoulder I was treated for months with shots, therapy, ice, some sort of machine to break up calcium buildup and had exercises at home to do after going three days a week for therapy. I still use the bands for stretching. I also had a pulley system of ropes to pull my bad arm upward using my other arm to pull up my arm from the wrist. It can be painful but you do what you need to do so that you can recover completely. I also would lay on the floor on my back with a broom stick or long pole and work at getting my arms to pull the stick to the floor over my head. Some of the same exercises can be used for both surgery and non-surgical patients. I sure hope all of you get full use of your arms again. I was told that my frozen should could come back at any time. I have had a two year reprieve so hopefully it won't happen again. Very painful 9 months. Best wishes for a full recovery.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#8 svoss

svoss

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 12 February 2011 - 01:10 AM

Dear All,

I am overwhelmed by your kindness and compassion, your sharing. Wow! Thank you!

"Armed" with information of your real life experiences, I had a serious chat with my PT today -- bottom line: No more screaming and crying; slow and steady will win this race and, ultimately this is my body and I say when enough is enough. That said and a couple of books on SSc brought with me and left there for them to read, the young PT was quite different with me today and has begun to 'reach' outside her box, realizing "a little" that maybe some things do not fit neatly into the models and rules she was taught. With my suggestions of: a little slower, let's pause and let me get back into breathing rhythms, then we can continue -- and her response was quite good. With her focus on gentle movement and easing me into a little farther stretch rather than just jerking where she wanted it, I was able to move more today; a small step in the right direction for the both of us. AND only a 2.5 hr session – which is the shortest I have had (timing from arrival to leaving). I am a little apprehensive about next week, but less so that when I wrote last evening.

Being one’s own advocate can be exhausting … and frustrating … and sometimes downright difficult. It takes a lot of energy. And I had forgotten how important it is, regardless.

Your encouragement also spurred me to get in touch with and begin what appears to be a rather lengthy screening process at our regional Scleroderma center with one of the top specialists in this part of the country -- still six hours away but well worth it. As appointments/schedules come together I'll keep you informed.

Sheryl, I have both the bands and the pulley you discussed -- they are fantastic. I use a cane for the overheads rather than a broomstick - the handle lets me gradually change the position of the op'd arm. You’re so right – they make a difference.

I'm no physical therapist but I have an additional home exercise some of you may find comforting: just lying on the edge of the bed, tummy down, letting weak(er) arm dangle over the edge of the bed and hang by its own weight (going only as far as it 'wants' to go --I swing little circles with my fist increasing to larger ones (slow and steady). Sometimes I just let the arm dangle. On a 'good' day I add a 1 lb weight. With or without the weight, this relaxing stretch has helped me to dull the aching and throbbing (and did pre-surgery also). I always feel I am at least a little less stiff and can move a little better afterword. Perhaps it can help add a very well deserved "ahhhhh" to someone's otherwise "arghhh" day.

Thank you all so much, from the bottom of my heart. More than anything I no longer feel like a little boat afloat and anchorless in a huge ocean.
SV.

#9 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 12 February 2011 - 09:42 AM

HI SV

I am really glad to hear that your PT is listening and taking on board your special conditions. I have had things in the past where you get people who were trained and they follow 'The book' not taking into account everyone is different. Hopefully now you will continue to make good progress and your pain will get less and less.

Glad you found this site as well, I was struggling and lost and found all these kind people here. There are so many helpful people and loads of helpful information on this site. Keep posting and let us know how you are doing, or just vent and chat!

Cheers
Jean

#10 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 12 February 2011 - 09:51 AM

Hi Svoss,

Good for you; I'm so pleased that you've been able to approach your PT with confidence and that she's taken on board your concerns. It's excellent news that you're also going to be dealt with by a Sclero specialist.

With such an unusual disease as Scleroderma it is very important to be your own advocate; I have been fortunate in that I was dealt with by top lung and Sclero experts but my general practitioner has only ever seen one case of Sclero apart from myself during her whole career. Consequently, I do tend to tell her her job quite a lot of the time (in the nicest possible way, of course; she's actually a complete star and always refers to my consultants before she does anything. ;) )

I do hope that the rest of your rehabilitation goes well and you make slow but positive progress.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#11 mando621

mando621

    Silver Member

  • Members
  • PipPipPipPip
  • 212 posts
  • Location:Wisconsin

Posted 12 February 2011 - 10:19 AM

Hi all,

I had shoulder surgery about 2 years ago now. It was a decompression surgery after separation of collar bone didn't really ever improve.

Physical therapy wasn't fun, there was one day when I left the office in tears because we pushed past the point where my arm had been willing to go. When I returned the next time, the therapist explained that that is the toughest part of his job. He has to convince the body that it is okay to move beyond what it thinks it should that one time, and then from that point on the body realizes that it can do more. The therapy was never to that point again, and I actually could feel that improvement was happening and the pain that I had was sort of a good pain, (because I was getting back to my normal abilities). I used the pully and bands and yard stick dilligently. I pushed myself slightly, to the point where I could feel some pain, but it was definitely bearable. I am back to nearly full range of motion, but I do need to look out for that shoulder. Sleeping on my side is one of the main culprets for pain in my shoulders now. Every now and then I need to go back to the bands to strenghten my back muscles and get them working at keeping my shoulder where it should be.

I'm not suggesting that PT has to be painful, but it made sense what my therapist said about getting the muscle memory to change. So if you have one painful, really beyond painful, experience and then it goes well from that point on, I think that is normal. If it continues to be beyond painful, then something isn't right. It did take a year for my shoulder to get back to near normal. It continues to improve as time goes on but I have to be careful that I don't get squeezed too hard or I can feel it. (bear hugs from hubby sometimes are too much)

Best wishes for improvement. Take it slow and steady.

Mando.

#12 winnie97

winnie97

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 22 posts

Posted 12 February 2011 - 03:12 PM

Thanks for all your information.

I saw the doctor on Thursday, she didn't say much about my shoulder, and was more concerned with my hip. I've had bursitis in it for a number of years, the steroids I was on kept it at bay but since coming off them in January it really flared up, so now I'm back on the steroids on a higher dose than before. She will decide what to do when I see her again on 4th March; she also said that is when we will talk about my shoulder and where to go from here with it.

Regards
winnie97

#13 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 25 February 2011 - 12:09 PM

Hi Svos,

I mentioned this to my physical therapist about this yesterday. She said that most physical therapy after rotator cuff surgery is 1/2 hour per week (with half of that time just icing it), perhaps 1 hour at the max. She had never heard of such physical therapy lasting 2 hours, not to mention more than that. I still have just five minutes, twice a day for exercises, a total now of five very easy exercises which are to be done only to the point where I am "feeling" it and not to the point of pain, and no more than 10 repetitions each. The body can only heal so fast. I had a lot more improvement when I started adhering to the program better, meaning that I stopped trying to push to or through the pain and avoid the pain medications. I took it easier and surprisingly made much more improvement! My PT sessions are still just reviewing my exercises and having the physical therapist do a few minutes of passive range of motion for me. And never to the point of pain.

Even though your PT has come around a bit (good for your own advocacy!) I really think you should get a second opinion to make sure this is truly within reason for your condition, because your program sounds odd.

Sheryl, I'm not allowed to do the bands yet. I'm eager to get to the point where I can lift weights and use bands. But slow and steady is what wins this particular race so I'm reining in my tri-athlete ambitions, for the moment.
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.

#14 svoss

svoss

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 10 March 2011 - 12:11 AM

Hi Shelley,

Thank you so much for your concern and for speaking with your PT on my behalf. I am looking forward to my visit to Denver in a couple of weeks and am hopeful that I will be in safe, knowledgable, expert hands at last.

As for the PT, they've backed off a lot after reading the books I took in and doing some research (hoorah for this PT for having that initiative). There is a lot more "feel good" time now (heat, ultrasound, gentle massage, ice) along with steady but gradual strength and stretching. I'm not having rapid progression on my degree measurements, but I'm not regressing anymore either, so that's a very good thing. I just have to wonder: will this ever stop hurting ...

The therapy for shoulder patients up here overall is quite aggressive.

Thank you again for being concerned about me. I hope your own therapy is going well and that you are feeling better every day!! Here is a big hug from Wyoming!

svoss

#15 svoss

svoss

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 10 March 2011 - 12:30 AM

Hello, Joelf,

Forgive the delay in my response to your kind note, please.

My general practitioner here has also seen only one other case of Sclero in his career (he will soon retire) and he's not really sure that the other case was Sclero. He's receptive and kind, but I do get the feeling he thinks I'm a bit of a hypochondriac. My rheumatologist also has not had much experience with Sclero, but not much on the systemic side ... as I said earlier, I'm sort of in 'No Know Land." :-)

I am so hopeful that this part of my story will undergo a great 'plot shift' with my visit to the Sclero doctor in Denver in a couple of weeks. The tests lined up for me during my visit there seem to be checking me from the crown of my head to the tips of my toes, inside, outside, upside and downside. The dialog with the doctor even before the appointment has been very good.

Just a sprinkling of hope makes a world of difference.

No kidding about having to be one’s own advocate ... I have stopped going to doctor's appointments without at least one really good reference book with me. It takes a lot of time and effort to learn about this disease ... and even more to be able to speak about it smoothly and confidently.

Thank you again!

Warm Regards,
svoss

#16 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 March 2011 - 05:48 PM

Hello Svoss

Here's a late welcome to the forums! You are a perfect example of the why and how of being your own advocate :emoticon-congratulations:!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#17 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 11 March 2011 - 05:53 PM

Hi Svoss,

A late welcome from me too! I'm down in Colorado, so we're practically neighbors. I hope we'll get to hear a lot from you in the future.

Best wishes and welcome again,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#18 svoss

svoss

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 11 March 2011 - 11:47 PM

Thanks Jeannie(CO) & Amanda (UK) and everyone for your good wishes.

I am so happy to have found this site and all you kind and caring people.

It does become somewhat exhausting to try to explain this disease to someone, who will almost inevitably shake their head, blink rapidly at me, and respond something such as, "Scler-o-what-apous? Isn't that close to the sinuses?"

Well .... jeepers, I guess it could be. Or there's the "if it's that rare then you probably really don't have it." Okay. Well,obviously ... why didn't I think of sticking my head in the sand like that? Or possibly, "My Aunt Millie had that 50 years ago ... she drank vinegar and bicarbonate of soda every day for a week and she got rid of it." And everything else in her system I suppose? I only put that stuff inside my body when it's encased in red velvet cake. Maybe she ate a lot of red velvet cake ....

So usually I just withdraw a little more about any 'sharing,' do a better job of 'acting' ok and join everyone else in ignoring the elephant in the room ... until the moment comes (usually in a group) when someone says, "Say, you look different .... has something happened to your lips? And your hands?" Yes, actually I ran into a dinosaur. I think it was an awful-lopogus while I was traveling to Sinusitis where I contracted this strange but not contagious type of cold or something from drinking the water there. A Dr. Ostrich-most-the-time-agus prescribed a rare medicine to which I have had these really bizarre side effects. So I just eat red velvet cake and eventually it will all disappear. And that is laughed off and on we go.

It's wonderful to just be able to be. I can do that here with you. Thank you. It's nice to know that though I walk a different path than most, and though my experience along the way is not the same as most, I'm no longer walking that path alone.

Svoss xxx

#19 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 12 March 2011 - 01:05 AM

Svoss, I think we should set up an official study via the ISN of the benefits of having red velvet cake twice a day! Count me in!
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#20 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 12 March 2011 - 09:45 AM

Hi Svoss,

You are absolutely not alone in dealing with people's odd reactions to the word scleroderma. Awareness seems to go in two major directions. The first is, they never heard of it, so it must not exist and you must not have it. The second is that they have heard of it, in fact knew someone who died of it (or saw the movie), and therefore, because you are still living, you must not have it. Well, yes, that's all absurdity.

Sometimes I'm astounded when I run into caring and open-minded people who say, "I've never heard of it, please tell me more about it." Then I'm in such deep shock that I hardly even know what to say.

It's also been quite an awakening for me when I had rotator cuff surgery a few months ago. People have come out of the woodwork everywhere I go, full of sympathy and concern. It seems everyone knows someone who has had rotator cuff surgery and the word on the street -- everywhere -- seems to be unanimous agreement that it is very painful. Instant sympathy. Instant concern. Meanwhile any mention of scleroderma usually draws a perplexed look, a little shake of the head, and a dramatic dwindling of interest. I can understand it though because it is a bit like spouting a word from a foreign language and expecting to be understood. Sclero-what-its?

Working together, we can all do whatever we can to raise awareness of scleroderma. We offer books, brochures, awareness bracelets and even school report resources to help us reach out to our loved ones and to the general public.

If we all say it loud enough and long enough, some day our message will be heard and those who follow behind us will be greeted with more compassion and understanding.

:emoticons-group-hug:
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.