Friday, December 31, 2010

100 Pounds

Well, it took an extra week but I weighed in at 100 pounds this morning. I have been eating lots of turkey along with all the trimmings but it looks like it hasn't done anything to increase my weight, no surprise really, but I have enjoyed the experience of eating all that great food nonetheless. I am seriously considering going back to drinking an Ensure/Boost every day, something I did up until the time I started TPN.

On another note, I fell the other night as I was on my way to bed. My IV stand which has four wheels that all want to go in different directions at the same time, was the culprit that tripped me up. Fortunately I had my cell phone in my pocket so was able to call my daughter as I lay on the floor bleeding profusely from a couple of gashes on my head and she and her partner were here in five minutes. Also scraped up a knee and my shins pretty badly.

My inability to get up after a fall does give me cause for concern. If I hadn't had my phone I could have lain there all night and that prospect scares the hell out of me. I am considering getting one of those alarms that I can wear around my neck when at home and will probably look into it next week.

And finally, my winter chair is in the shop with a broken gearbox. Repairs are complicated by the fact that the chair has been altered to fit my snow tires but I have enlisted the help of Joe from Tetra who has generously agreed to help get it up and running again.


Sunday, December 19, 2010

98 and Counting

The title says it all really. This past Friday, my weighing in day, I was 98 pounds which means that I have gained 8 pounds since going on TPN. It also means that, as predicted, for the past three weeks I have gained 2 pounds /week. Should the trend continue, that means 100 pounds for Christmas and I can't think of a better present than that.

I have spoken to my dietician a couple of times since last writing here and everything looks good from her end as well. My weekly blood work indicates no problems so as long as everything continues in this vein I can start doing it monthly in the new year.

Oral intake of food continues to be a positive experience so I am really looking forward to Christmas dinner, twice, this year.

And on that note I'll sign off by wishing everyone a very happy holiday season. whether it be Christmas or Hanukah or just a time to spend with family and friends. And all the best in the new year.

Friday, November 19, 2010

Two Weeks on TPN

Well, it's been two full weeks that I've been on TPN and it continues to be a very positive experience. The best part is that I am eating real food every day without any ill effects - no reflux, no diarrhea - and that alone has boosted my spirits. I also have more energy to the point that, a couple of days ago, I went on a cleaning frenzy and got rid of all the clutter that had accumulated around the place. feels really great to have that out of the way finally.

Yesterday the dietitian in charge of making up my formula called to see how things are going. I asked about the lack of weight gain and she said that was as she suspected because she had intentionally kept the calorie count down (1600 cal.) because she didn't want to overwhelm my body to start off. The next batch of formula will have an additional 300 cal/day which should mean that I will gain an average of 2 pounds/week. Sounds good to me.

Sunday, November 14, 2010

It's All Good

First of all, my hand, although I am experiencing some pain, is doing well. No pain killers for well over a week now. Yesterday my hand slipped while turning on the stove and I banged it and that hurt like hell but the pain subsided pretty quickly so no real harm done. I'll just take it as a warning to be more careful in the future. On November 26th I will be seeing an OT to see if we can do something to make my middle finger more functional. It is currently displaced away from the thumb so I would like to see if it can be helped to move back more towards the thumb so my hand will be more useful.

TPN continues to go well also. I decided that I would weigh myself each Friday, thereby avoiding potential disappointment by checking my weight every day and seeing no progress. Well, I was still disappointed this past Friday when, after one week, there was no significant weight gain. Perhaps I'm expecting too much in such a short period. I can't be entirely certain about the accuracy of my bathroom scales but I may have gained a pound, possibly two, in which case I would be delighted. At worst, I have stayed the same which I can also live with. I should also mention that I have not, as suggested by my dietician, done any G-J tube feeds in this time period, nor have I been drinking boost every day. The reason is that I am simply enjoying not feeling bloated all the time and, even better, I am taking food orally on a regular basis and my bowels are handling it just fine. I've even stopped taking the pariet and have not had a single bout of reflux. This makes me think that it may have been my formula which was causing the problems previously.

Need I point out how much I am enjoying eating real food again? Today, for example, I have had scalloped potatoes and meat loaf which my daughter brought over. For dessert I had Oh Henry bar pieces and I have also had tea, hot chocolate and just finished a coffee. And I am still hungry but will resist eating more as I don't want to overdue it. A couple of weeks ago this would have been unthinkable.

So, in summary, I am feeling much more positive about life again and that's got to be a good thing.

Wednesday, November 3, 2010

Update

The past couple of weeks have been very busy. The amputation site is healing very nicely and I suspect that stitches will be removed when I visit the hand surgeon tomorrow. The pain is best described as intermittent and varying but overall mild to moderate. Some days it is sharp and stabbing and others a dull throb but always isolated to the stump and phantom finger.

Today, with our third class, my daughter and I finish our training sessions for TPN . The PICC line was inserted in my upper left arm yesterday, a quick and painless procedure. Tomorrow my supplies arrive and I begin my TPN feed and before you know it everyone will be calling me chubby cheeks.

Update: It's now Friday. First feed went well. I even woke up this morning feeling hungry and that has not happened in a very long time. Had a pudding cup and an Ensure which pretty much filled me up.
I was right about the stitches, they were removed yesterday. The hand surgeon was very pleased with the way my hand has healed as am I. Here's a pic if you're interested.

Wednesday, October 20, 2010

Post Op

The surgery went very well. Everyone at St. Joe's was amazing. Used a nerve block, actually two, and only needed a little over an hour of the two hour scheduled. Had a decent night's sleep getting up once for a percocet which kept the pain to a dull throb. Home care nurse came just before noon to change the dressing which gave us an opportunity to snap this picture. My son Mike stayed the night and did a great job of looking after me.

SI have an appointment to see the hand surgeon tomorrow.

And finally, a big thank you to Bea for helping me get through the day.

Saturday, October 16, 2010

Surgery & GI Developments

Had a 3 hour pre-op meeting yesterday. The only potential problem centred around the type of anesthetic that would be used but after much debate and a consultation or two they decided to go with a local rather than a general. Phew, for a while there I was quite concerned because they wanted me to shave my moustache which I've had for pretty much my entire adult life. So, surgery is a go for Tuesday. Not looking forward to it at all.

On Thursday I saw my GI doctor and the result of that visit is that I will probably be going on TPN although we are trying a double course of antibiotics first as one last stab at cleaning out my gut. In order to be prepared for the TPN, my daughter and I will be attending training sessions in a couple of weeks. My daughter will be the one to hook me up at night and unhook me in the morning as I won't be able to do it myself. We will probably use a PICC line instead of going into the chest directly. The plan is to try TPN for a couple of months to put some weight on, 20 pounds or so, and then go back to the tube feed. but it's all pretty much up in the air for now so we'll just have to wait and see what develops.

Add this to the surgery and I'm feeing a little overwhelmed right now but am trying to remind myself to just take one thing at a time. In the meantime, it's a beautiful fall day so I'm going to take my dog for a walk and enjoy the sunshine.

Saturday, October 9, 2010

Coping Well

The pain is now under control but I'm still coming to terms with the upcoming amputation. I am able to use my finger at present and it seems odd that, in a week and a half, it won't be there. I mean, it's functional and I look at it and it even looks fine, well, that part not covered by bandages anyway, and I just can't imagine it being gone. And then I was clipping my fingernails the other day and I realized it would be the last time I clip that one. Too weird.
Just some random thoughts on what I'm feeling right now. It'll all be fine I know. If you are interested in seeing the wound, I have posted an image on Flickr. Beware, it's not pretty.

Wednesday, October 6, 2010

Amputation

Yup, that's right, amputation was the verdict when I saw the hand surgeon today. As soon as he unwrapped my hand he matter-of-factly stated "I can't do anything with that. It [right index finger] will have to be amputated." I asked if he was serious but of course, he was. The bone is open to the air and is surrounded by cartilage and tendons - all the skin is gone. Not a pretty sight believe me. If all goes well over the next two weeks, I am slated for surgery on Tuesday, October 19. Guess I'll have to learn a new method for tripping the shutter on a camera. Shouldn't affect my guitar playing though. As for every day activities, well we'll just have to wait and see.

For now I just have to live with the pain. The doctor used some surgical scissors to remove tissue from the wound today and just now, 6 hours later it is settling down some.

Sunday, October 3, 2010

Calcinosis Infection

I know my original intention was to keep this blog positive but lately that has been difficult. And now I have a new problem to report. the basal knuckle of the index finger on my right hand has become infected and it is, to put it lightly, making my life difficult. A week ago today, last Sunday evening, I noticed that the knuckle in question was red and swollen and it was causing me some discomfort. I progressively grew worse such that by Wednesday I could no longer put off a visit to urgent care at a nearby hospital. Over the next three days I was given antibiotics by IV, saw a hand surgeon who switched me over to oral antibiotics and am now receiving daily visits from a nurse who changes the dressing on my now draining, very raw looking and painful knuckle. (Of course getting the IV started was also a major challenge just to add to the discomfort.)

I have calcinosis in said knuckle and apparently some bacteria have made their way into the area through a small opening in the skin caused by the calcinosis which, in turn, caused the infection.

So, there you have it, yet another complication from scleroderma.

Wednesday, September 22, 2010

Fall Meeting

The fall meeting of the London group of the Scleroderma society of Ontario will be on Saturday, October 23 from 2:00 to 4:00 at the Good Shepherd Lutheran Church, 552 Fanshawe Rd. E, London, Ontario.


Friday, August 27, 2010

1 Week Post Prednisone

The week on prednisone was great. As the dosage was decreased, I noticed the return of some minor pain but things were still pretty good. It's now been a week and a day since I took the final dose and I'm doing not too badly. If my pain was at a 10 before prednisone then I went to about a 1 as soon as I started it. I'd say I'm now alternating between a 3 and a 4, depending on the day and I can live with that. Trouble is I realized that being at 1 was a possibility and I wouldn't mind going there again. But at what price? Prednisone taken on a long term basis can be pretty nasty so if there's an alternative I like to know.

I tried to call my rheumatologist last week to discuss the future but she was on holidays and will be back this coming Monday. I'll call her then to see if I can get in to talk to her.

Saturday, August 14, 2010

Did I Mention I also have RA?

It just occurred to me that I may never have pointed out anywhere on here that I have rheumatoid arthritis as well as scleroderma. The reason I haven't mentioned it is that it had pretty much gone into remission. When I started having more pain about a year ago I put it down to scleroderma but am now convinced that the RA has returned. I bring this up now because of the prednisone which is not normally used for scleroderma and should, in fact, be avoided as it can cause renal failure but since I have no apparent renal involvement I guess I'm okay to take it.

Anyway, I am happy to report that the prednisone is doing its job and that I am virtually pain free. This is now day three and I feel great, have been sleeping better than I have in months, and when I finish with this blog entry, I am going to grab my guitar and give it a whirl. Yeehaw, life is good again.

Thursday, August 12, 2010

Prednisone

Well, the title says it all. I phoned my doctor's office this past Monday and they got back to me today. Dr. Pope wants me to go on Prednisone. Can't say I'm very happy about it but then if it will help I'm about ready to try anything right now.
The dosage will be 20 mg for two days, 15 mg for the next two, then 10, then 5 and that's it. I started this afternoon and after about three hours started feeling better - less pain. It's now 6 hours later and I notice a significant difference in the pain level. I feel very mild nausea but not enough to really bother me. A pretty good trade off I'd say.

So, we'll see what the next few days bring but I am encouraged by the quick results.

Saturday, August 7, 2010

August Already!

It's hard to believe that July has come and gone as has the first week of August. I wish I could say that it's been a great summer but GI issues and pain have put a damper on things.

There have been two occasions in the last couple of weeks when I've had to stop my feed due to nausea. One, I'm reasonably sure, was due to something I ate so it's my own fault. I really don't like to skip feeds 'cause I lose weight so easily and then have to fight like hell to get it back. I'm still about 100 pounds, dressed, so the consequences haven't been too severe. I'm hoping it's just a temporary thing and that I can get back on track which, at present, is still four bags of Vital HN per day.
And then there's the pain. It's been going on for a year now but is progressively worsening despite taking Arthrotec, and Celebrex before that. A week ago I forgot to order my Arthrotec so had to go one night without it and at least I know now that it works because it was a terrible night with extreme pain and virtually no sleep. But it's just not enough. My rheumatologist has been on holidays but will be back on Monday so I will be calling to see if I can get an appointment to adjust my meds. As an indication of how bad the pain is, I have spent about an hour on the guitar, in total, all summer. When I was feeling well, it wasn't unusual for me to spend two hours or more a day, every day. But now after fifteen minutes, when I'm just getting warmed up, I have to stop due to the pain. So, something has to be done 'cause I derived a great deal of pleasure from playing. My other hobby, photography, is also suffering.

Well, enough said. I really don't like to gripe here but I also want to present a realistic picture of what it's like living with scleroderma so I hope you, dear reader, will forgive me this little rant and hopefully my rheumatologist will have some answers for me when I see her.

Wednesday, July 7, 2010

GI Update

Been a while since I posted here so thought I'd share how I'm doing with the new formula, Vital HN. There's not a lot to say really except that I'm currently managing 4 bags or 1200 litres/day. I do two overnight at 65 ml/hr which gives me about 8 hours. The other two I do throughout the day at around 85 ml/hr. I've tried 90 ml a couple of times but started to feel some discomfort so backed off. My goal for now is to add one more bag throughout the day but unless I can get the speed up that will be difficult if I want to go out at all. I've also been drinking a bottle of Ensure Plus each day which brings me up to 1555 calories a day. Will keep working on it. My weight, incidentally, seems to be staying the same at just around 100 pounds.

The London Group of the SSO lost a long standing member, Jill Martin, a couple of weeks ago. From my understanding it was GI issues which ended her long fight with scleroderma. We'll miss her.

Tuesday, June 15, 2010

New G-J Tube

Went in to get my tube replaced today. The first reaction the prep people had once they got me on the table was surprise at the age of my old tube. Seems they haven't made them like that for quite some time. When I told them I'd had it for over two years, I was told that normal practice is to replace them every eight months. Who knew? Consequently, as they were inserting the new one, I was informed that they would book me an appointment in eight months for the next one. The good news is the procedure is only mildly uncomfortable and it didn't even require the local anesthetic which they used for the original. And no nasal tube either.

The new tube is different in that there's no shut off valve on this one which means that, when flushing, I'll have to be quick getting the syringe on or it could get a wee bit messy. Shouldn't be a problem.

Sunday, June 13, 2010

No TPN - Yet

On May 24 I wrote that I would be calling my GI doctor about my recent weight loss and my inability to get a full feed into me. Well, I did call and I saw him twice in the next week. As a result of my visits I will be trying yet another formula, Vital HN. According to the dietician who works with the doctor, this should be easier for my body to absorb. the drawback is that this product comes in powder form so I will have to mix it up one cup at a time. It also has a hang life of only six hours which means no more overnight feeds. So it's a matter of convenience really but if it works it should be worth the extra effort.

It also means using a new type of bag and tube, they arrived Friday. And the Vital is now on backorder so I haven't received it yet and have been continuing to use the Peptamen 1.5 in the interim.

It's also worth mentioning that the doctor prescribed Ciproflaxacin, an antibiotic, to clean out my gut. This is to replace the erythromycin which we had used previously. I am happy to report that the cipro worked from day 1 - no more diarrhea and I am taking some food by mouth again because I actually feel hungry. It has also allowed me to venture out of the apartment more because I am no longer afraid of having an accident. Put all this together and I can say that I am enjoying life again. Yeehaw.

Oh, one more thing. In a couple of days I will be going in to have my G-J tube replaced. A couple of months ago it developed a small crack where the hardware joins the tube. I patched it, first with duct tape, and then with duo-derm, but it still leaks occasionally so I'll be happy to get that taken care of.

Friday, June 11, 2010

Walk a Huge Success

Dr. Janet Pope cutting the ribbon to begin the walk.

Well it's been almost a week since the walk and concert, the dust has settled and we just got our final tally today which stands at $13 163.49. Because this was the first walk we have organized, we really had no idea how it would go but, needless to say, this far exceeded any expectations we may have had. A great deal of the credit and a huge thank you goes out to our members, especially Angela Lavis and Stephanie Doyle and their families who came on board part way through the process. Their enthusiasm and energy made all the difference.

On a not so happy note, I just received word this evening that my brother, who also has scleroderma, died today. A timely and poignant reminder that we need a cure for this disease.

Monday, May 24, 2010

Update

Well, the walk and concert are fast approaching. As one indication of how much work it has been, I have approximately 250 emails in my Walk in the Park folder. I.m not complaining though. It's been fun with a few minor glitches yes, but everything's looking good for a successful walk and concert. Now we start watching the long term weather forecasts and hoping for a good day. So far it looks promising.

On a not so positive note, I am losing weight due to an inability to get my feeds into me. I've tried everything I can think of but I continue to lose weight so will call my GI doctor tomorrow to see if I can get in to see him some time soon. I have an appointment for the end of July but when I weighed myself today I found I'm just under 100 pounds so no more procrastinating. I suppose I've been postponing this call because I'm afraid I may have to go on TPN (Total Parenteral Nutrition) and I really don't want to go there. We'll see what comes of y call tomorrow.

Monday, April 19, 2010

Spring Meeting 2010

We will be holding our spring meeting this Saturday, April 24 from 2-4 at Good Shepherd Lutheran Church, 522 Fanshawe Road East. Our speaker will be Sarah Mclean B. SC. PH. D. candidate (cancer & fibrosis). The topic of her speech will be Perspectives on Cellular Research in Scleroderma.

Wednesday, March 31, 2010

Scleroderma Concert

And here's the concert poster. No explanation needed.

Sunday, March 28, 2010

Busy Times


Bea and I have been busy organizing our first Walk in the Park for Scleroderma these past few weeks. My tasks have been mostly computer related - writing letters, making posters and drawing up pledge sheets. We are also doing the concert again and I started working on that poster today as well. The bands aren't finalized yet so I won't finish it until everyone is confirmed.

Details for the walk are as follows:

Gibbons Park, London, Ontario on Saturday June 5 from 10:00 - 2:00

and the concert:
Same day at the
East Side Bar & Grill
750 Hamilton Road, London

3:00 - 7:30

Tickets at the door $10.00 or a donation of $10.00 or more at the walk.
Contact me for pledge sheets and more details.

Saturday, March 20, 2010

Spring

(click to enlarge)

As of 1:32 this afternoon it is officially spring. Actually the last two weeks have really felt like spring with record breaking warm temperatures and mostly clear skies. Now, I don't know if it's coincidence or not but my aching joints are not so achey these days. I have been feeling much better in general as a matter of fact, even playing the guitar more.

Found this mural the other day inside a mall and thought it was a good reflection of how I felt. Took it with my new camera, an Olympus Pen which I bought because it is even smaller than my Canon Rebel which I just sold yesterday. It also has live view on the back display panel so I don't have to lift the camera to eye level which has been a problem these past several months.


Sunday, February 21, 2010

Six Years Since Diagnosis

It's been unseasonably warm this weekend, just above freezing, sunny with calm winds so I've gone out for coffee both days. Tonight we are to get a significant snowfall with snow all week but not enough to be a problem. Today's weather put me in a gardening mood so I transplanted and repotted a few of the plants I've been neglecting. Felt good to get my hands dirty.

Just realized tonight that it was February of '04 that I was told that I had scleroderma. As I've stated elsewhere, the first couple of years were the worst as far as progression goes. Range of motion in my joints remained pretty much unchanged. The next four have been about my weight. As I sit here writing this the pain in my knee serves as a reminder that joint pain, which has been very mild over the past four years has returned and with it some loss of range of motion in my right arm and possibly my right knee. I have been taking Celebrex since October but it's not been very effective. I should probably phone my doctor but I hate to bother her so will probably wait until I see her in April. We'll see how it goes.

On another topic, I seem to have a lot of repeat visitors here (Site Meter allows me to monitor the location of visitors) and I would love to hear from some of you so please consider taking a couple of minutes to leave a comment.

Monday, January 18, 2010

Weight

Just wanted to post a quick update on my GI status. I am delighted to report that I have gained 5 pounds and am currently sitting at 115. I'm not sure when I last weighed this much but it's probably been at last 3 years. People are remarking how well I look and asking if I've gained weight. I find this a bit surprising because five pounds really isn't that much and this being winter all they really see is my face. Whatever it is, it feels good and I will continue to work hard at maintaining this weight. As for the reason. I can't blame it on Christmas as it was just before the holidays that I noticed that I'd reached to 114. I have been taking just the 1 liter of Peptamen 1.5 and some days less but I have been drinking one and occasionally 2 Boost or Ensure, the high calorie ones (355 cal.) every day without fail. Of course, over the holidays I also took in more orally including 2 Christmas dinners and then there was all the chocolate given to me by friends, all trying to do their part to fatten me up no doubt. Next week I see my GI doctor so will have some good news for him as well.

I can't say that the added weight has given me any more energy and my joint pain continues to be a problem but in general I am doing well and still benefitting from the added seasonal mobility provided by my new set of wheels.

Friday, January 1, 2010

Finished


Yesterday, Joe and Mary came over to install the tread plate aluminum fenders which means we are done and I am delighted with the results. This is one mean looking wheelchair as is evidenced by the comments I get whenever I take it out. It's already becoming somewhat of a legend in downtown London. But more importantly, it is a joy to ride in the snow. Now when I venture out onto the snow covered streets, instead of being nervous about getting stuck, I actually find myself looking for snowdrifts. When I relayed this information to Joe and Mary they reminded me that "There are limits" but not to worry, I haven't completely thrown caution to the wind.

The ability to traverse the city streets in winter means that I no longer dread winter but in fact look forward to it knowing that, unlike in previous years, I could be stuck in the apartment for days at a time after a heavy or even moderate snowfall. And I no longer lay awake on snowy nights wondering if I will be able to get Molly out for her morning walk. I truly do feel liberated knowing that one more hurdle has been overcome thanks to the folks at Tetra.

And speaking of the folks at Tetra, I'd like to add that Mary and Joe have been wonderful throughout this entire project and I consider it a privilege to have had this opportunity to work with them. And I can't forget Wilma, my original contact with Tetra, to whom I am also extremely grateful.

Well, we've been having snow squalls all day resulting in an additional 15 cm of snow and it's time to take Molly out for her evening walk. Yeeha, should be fun.