Becky

Amputee Questions and Information

2008-07-11T06:45:00Z

I’ve been thinking about writing this for a while. I’ve seen several posts from amputees asking many of these questions. I have been a right BKA for three years. I use a silicone liner with a pin system. So, here goes:

If You Have Questions: If you are fortunate enough to know ahead of time that you will be having an amputation, here are a list of questions to ask your physician:

Before Your Amputation: Questions to Ask Your Surgeon

Talking with your surgeon prior to amputation is important. You should meet your surgeon, feel confident in his or her abilities, and have all of your concerns addressed before surgery is scheduled. Listed below are some questions we consider important. You may want answers to all of them or you might choose those most important to you. Your surgeon should be willing to take the time to answer any questions you have.

1. Is amputation the best solution?
2. What experience do you have in this type of surgery?
3. How long is the procedure?
4. What are the major risks of the surgery? What steps will you take to minimize those risks?
5. What kind of pain will I have after the surgery and for how long?
6. How will my pain be managed immediately following the surgery?
7. How will long-term pain be managed?
8. How long will I have to remain in bed?
9. Will I have drains? If so, when will they be removed?
10. How long will you supervise my care after surgery?
11. When will I be fitted with my first prosthesis?
12. Will I be able to meet with a prosthetist before the surgery?
13. Should I be able to use a prosthesis? How much functional ability will the prosthesis provide?
14. If I want to talk with someone who has been through a similar amputation, could you refer me?
15. Could you refer me to a support group?

Other Questions: For Your Nurse and Anesthesiologist

1. How long will I be in the recovery room?
2. When will I be able to visit with my family?
3. What kind of anesthesia will be used during surgery? What measures will be taken to reduce reactions to the anesthesia?
4. When will stitches be removed?

Of course, you should only expect general answers to these questions. You may experience something totally different from what you are told. Every amputee experiences a different result from surgery. The link for this post is: http://www.dlife.com/dLife/do/ShowContent/type2_information/preventing_complications/feet_before_your_amputation.html

Phantom Pain: I know everyone is worried about this, as was I. Here is the definition from MayoClinic.com:

”Phantom pain feels like it's coming from a body part that's no longer there. For decades, doctors believed this post-amputation phenomenon was a psychological problem, but experts now recognize a physical cause for this pain — and that it actually originates in the brain.

Most people who've had a limb removed report that it sometimes feels as if their amputated limb is still there. This painless phenomenon, known as phantom limb sensation, can also occur in people who were born without limbs. Phantom limb sensations may include feelings of cold, warmth, itchiness or tingling — but should not be confused with phantom pain. Similarly, pain from the remaining stump of an amputated limb is not the same as phantom pain.

For some people, phantom pain gets better over time without treatment. For others, managing phantom pain can be challenging. You and your doctor can work together to treat phantom pain effectively with medication or other therapies.”

This link has a lot of information about symptoms, causes, etc., of phantom pain. Here is the link to this quote, for further information: http://www.mayoclinic.com/health/phantom-pain/DS00444

I did have some phantom pain, right after surgery. However, this dissipated over time and all I am left with now is occasional phantom pain and/or sensations. I take Neurontin too and that helps a lot. It does cause sleepiness though. There are other medications that help with phantom pain and/or sensations too, so you can ask your physician.

LINKS I have found a few links about amputee information. This next one is from the Amputee Resource Foundation of America. Keep in mind that a few of the links are selling things, so don’t think I am promoting or advertising anything here. The link has a lot of information here about amputation and will send you to many reputable sites, such as The Amputee Coalition of America (ACA). I belong to the ACA and receive their bimonthly magazine, which is loaded with information just for amputees. They are also fighting for prosthetic parity from insurance companies and how they pay for prosthetics. There are also links to prosthetic companies in the Amputee Resource link.

Here is the link for Amputee Resource: http://www.amputeeresource.org/Resource%20Links.htm Here is the link for the ACA: http://www.amputee-coalition.org/index.html

ASSISTIVE DEVICES: First and foremost, if you are a lower limb amputee and you are physically able to use one, get yourself a wheeled walker with a seat on it. I absolutely hated using a regular walker and had so many balance problems with it. No more worrying about tripping on carpets and such, like you do when hopping around with the walker. When I don’t have my leg on, I sit in my wheeled walker and push myself around with my good leg. I go backwards, since it’s hard to push yourself forward, and can really go on the straight stretch! It’s hard to steer sometimes and you may have to lift it up to move it in the direction you want. Remember to use the locks that come with it, when transferring though. Your life will be so much better with this kind of walker!

If you have a silicone liner or even a suspension sleeve and have problems with sweating, ask your prosthetist if you can use antiperspirant spray. You need to get the antperspirant without the deodorant in it though. I couldn't find this in my local stores, though you might. I did find a roll-on kind, but it did not work and was a pain to use. I order my spray on-line and there are several sites that sell amputee supplies. It’s over $13 to order, plus S&H, but a bottle lasts six weeks to two months. This spray has really helped me with sweating in my liner. One thing to watch out for though is dry skin. I have had problems with dryness since using this. If you get it, make sure you keep your stump well-cared for and moisturized.

I know, all the books say “No moisturizer or lotion.” I have to use it, because I have very dry skin. I got cellulitis from a dry cracked area on my skin, before I used it, and now use it religiously and liberally. There are several good moisturizers on the market.

For a good soap to wash your liner in, look in the acne care aisle at your store for a mild soap. So many soaps nowadays have moisturizers in them and I found they made my liner really slick and slippery, therefore causing air to get in. If you want to know the specific name of the soap I happened upon, send me a message and I’ll tell you. I do use a good moisturizing soap on my stump though.

Now, this is going to sound funny, but go to your local store and buy yourself one of those dishwashing thingies with the sponge on it. You know, the kind that has the hollow handle you fill with soap? I love mine! It is so easy to use and cleans my liner really well.

Another funny thing I tried on a callous on my stump is one of the skin scraping egg-shaped things. It works really well and doesn’t hurt you at all. Be careful though, I have had some bleeding when being overzealous with it. You might want to ask your doctor about this, especially if you are diabetic.

I got tired of using the plastic hooks to hang my liner on, because they always fell off. I found a place that makes a wire stand to put your prosthesis on. It’s about $15 bucks and costs $10 for S&H from NJ to Michigan, but it’s well worth it. It’s a bit top-heavy with the liner on it, but all you do is plop your liner on there and you’re done. If you want the phone number for this place, (they do not have a web site), please send me a message. Here’s a cool thing about this company. The guy who invented the stand had a brother-in-law who was an amputee and complained about the plastic clips/hangers not working. So, this guy invented this stand for his BIL! I told the lady who answered their phone that they need a web site and to start advertising it again in the ACA magazine.

Well, that’s all for now. Those are all of my gizmos and ideas about how to make my life easier as an amputee. Hope this helps!

Becky

We Both Made It!

2008-06-07T06:55:00Z

My oldest son, Travis, graduated from high school tonight. I'm so proud of him! He is the treasurer for his chapter of the National Honor Society, belongs to a school/community service club, has a 3.87 GPA, ranks 8th in his class, belongs to Big Brothers/Big Sisters and played football for three years and tennis for four. He jokes that his GPA would have been higher if he hadn't of played football! I think it's high enough and certainly a lot higher than mine ever was. He will be attending Michigan Technological University in the fall, studying chemistry or geology, or a combination of the two. He made it through high school!

I made it because I have been in remission from lymphome for the past three years and lived long enough to see him graduate. My first thought when I learned I had cancer was of seeing my boys graduate. Well, I made it for one. Now, I just have to make it for two more years, till my youngest son graduates.

What a wonderful, sad, heartbreaking, proud moment, seeing your children graduate from high school. I cried for most of it. Just bawled uncontrollably. I wasn't able to hide it well, because I was in the second row of the auditorium and my son was right in front of me. Oh well, who cares.

Life is wonderful tonight!

Becky

Busy Track and Prom Day

2008-05-04T05:42:00Z

Well, I began my day early today, up at 7 a.m. to take my son down to his track meet about 1-1/2 hours away. It took forever for them to start the track meet and then it was a qualifying event, preliminaries and qualifying final races. I was in a tizzy because I wasn't sure what time we were going to get out of there for the prom. I am a bad mother too, for a minute there I was hoping he wasn't going to do well in the prelims, but he did. Fortunately, they had the finals shortly after noon. He took fifth place. It was a hard race, 110 meter high hurdles. He is only a sophomore, so he did pretty well.

We got out of there and hurried home in record time. Then I ran around helping my one son to get ready and fielding phone calls from my oldest son asking me when I was coming to the high school to take pictures and then calling to tell me that he was coming home anyway. I ended up getting a lot of pictures of them at home and at the high school gym. It was a really crappy day, about 45 and rainy, so only a few outdoor pics. It was too dark for pictures of the grand march in the auditorium, but I got it on the camcorder.

Then my hubby and I went out to eat, rented a movie, "There Will Be Blood," and watched TV. I was tired after all the excitement today, Thank god those days are few and far between. My boys looked so nice all decked out in their tuxes. I'm glad they both went this year, since my oldest will be graduating this year. Next step graduation party and graduation. I'm running around like a chicken with it's head cut off here lately. O'm worried about how I'm going to do with being on my feet so much with the party. I'll be glad when the party is over with. Then I can relax till graduation and my oldest is done with school. It's so sad to think he won't be here next year and will be off at college. They grow too fast!

Good Night.

593 E-Mails!!!

2008-05-03T04:02:00Z

I haven't been able to sign on to Disaboom now for almost 48 hours. I was on the other night reading the Discussions when boom, all of a sudden Disaboom was gone and some error message came on, saying they were making repairs or remodeling the site or something. It also said to check back in a few hours. Well, shortly after that I started getting e-mails, e-mail after e-mail, till I got about 60 of them. Well, I figured, they must have the forum subscriptions for the discussions working again. I had signed up for several of them a few weeks ago and never got a one, till Wednesday.

So, I have been checking to see if I could get on several times over the last 48 hours. I was so lost, no Disaboom. Tonight, I signed onto AOL and found I had 593 e-mails!!!!! I couldn't believe it. I had gotten 573 e-mails from Disaboom. Of course, I read every one of them. LOL. Naw, I deleted them all. I had already read most of them anyway.

Well, I've been reading some of the posts and I was surprised to find out that some of the people have been making posts since yesterday. What's up with that??? Anyway, I'm glad to be back on. I really missed being able to read the threads and stuff.

Busy day tomorrow. I have to drive my son to his track meet in the morning, which is about an hour and a half away. He'll run one race, the 110 high hurdles and then we will drive home for him to get ready for the prom. Pictures at 2 pm and the Grand March at 4. Both of my sons are going. Yes, I have spent big bucks today. About $265 for the tuxes, $50 for flowers, $45 for pictures and given one of my sons money for their dinner. The other son is paying for his and his date's dinner himself. My other son needs a job too! LOL This is not including the gas either to run two vehicles about 50 miles tomorrow night. Gas is about $3.74 up here. Ridiculous. Well, you only live once eh?

Have a great night.

Becky

Three Years in Remission!

2008-04-26T06:41:00Z

Today, April 26, 2008, is the three year anniversary of my last chemo. I have been officially in remission now for three years! Wow, when I was diagnosed and given a 50% chance of surviving, I thought that I wouldn't make it. I have a friend whose son died from lymphoma too. He was among my first thoughts, It seemed like such a huge insurmountable obstacle. Only a 50% chance! I was so upset. I had this yawning cavern ahead of me that I had to find a way to cross and survive. I lamented the loss of my leg too. I spent hours awake at night thinking, "Why coudn't they give me better circulation in my leg?" Then I woke up, so to speak. There was nothing I could do about it, what's done is done. Get on with it. I think that attitude is what has kept me cancer-free.

My very first thought, after my husband told me I had cancer, was that I wanted to live to see my boys graduate and grow up. I did not want them to have to be sad about not having me there on that important date. I love my two boys to death. We are such buddies. My oldest is going through a non-ending hating me and/or liking me phase and has been going through it for a while, but he knows I love him. I know he loves me too. I sneak in a kiss and a hug every now and again. Teenagers, can't shoot 'em and can't live with 'em! He is graduating on June 6, 2008. I made it! Only one more boy to go in two years.

Don't you wish you could see into your future? You could see it and say, OK, I guess I don't have to worry about my cancer coming back after all or jeesh, my son will come around and appreciate me. I'm lamenting again.

I'm running around like a chicken with her head cut off now. I'm getting ready for his graduation party at the end of May. I'm really nervous and want to make sure everything is perfect. Thank goodness for my sister and her perfect taste in decorating. She has been a big help.

I'm a "going to college" expert now too. Ask me anything about student/parent loans and scholarships. I have a stack of papers that I have printed out from some web sites. This is a scary thing for us parents, sending our kids to college and trying to find a way to pay for it! I heard that the Class of 2008 has it harder than any other class before them in history, with the inflation, gas prices, student loan crisis and our generally crappy economy. Thank you Mr. Bush. We have our youngest son to send off to college in two years also. I told my husband that by then we will be living under a bridge and eating macaroni and cheese every night for dinner!

Three years, wow! I have arrived.

Good night.

30th Reunion

2008-04-25T06:31:00Z

So I attended the planning party tonight for my, ahem, 30th reunion. Now you know what I will say next don't you? I can't believe it's been 30 years already. Yeah, I don't feel 48. I realized tonight though that I am an old bag! I still feel like I'm 18, in my mind anyway. My body feels like 80 some days though.

How is it when you are a kid, the time goes by sooooo slowly and you can't wait to grow up. Then, the opposite happens as an adult. It should be the other way around, I think. For every 6 months of time say, our kids would age one day. Wouldn't that be great! On the other hand, it would be pure hell for someone with a colicky baby. I'm just lamenting the fact that my kids have grown up and are teenagers, I guess. I tell parents of young kids that I run into, not to wish away their kids years, that they will be teenagers and off to college before you know it.

The trick is, I guess, to enjoy every day and make the most of it, so you will know when you are very old, that you enjoyed life to it's fullest. Then, you will not lament over anything. I still just wish the days would go slower though.

Good night.

Breast Cancer Petition

2008-04-23T08:33:00Z

I received an e-mail about a breast cancer petition from my girlfriend today and I got really upset over what it said. It's about insurance companies wanting to make mastectomies an outpatient procedure. Unbelievable. I can't imagine going home right after such an extensive surgery. Sometimes I think the insurance companies care more about saving money than patient care. My mother had a lumpectomy 16 years ago and was in the hospital for a few days. A person needs that time in the hospital to recover a bit anyway. She was having her lumpectomy on the day I delivered my youngest son, Connor. I later went to visit her in a wheelchair up on her floor.

I was on birth control pills for several years off and on, and I paid for them myself, like every other woman I know. When I had to be on them later for medical reasons, I had to get a letter from my doctor in order for the insurance company to pay for the pills. Every time I went to the pharmacy to pick them up, I had to produce this letter. Then, years later, they go ahead and pay for Viagra! That makes a lot of sense.

I'm an old women's libber from the 70's and I will stick up for women's rights whenever I can. I guarantee you if men were the ones who mainly had to get mastectomies, this wouldn't be an issue at all.

Thanks for letting me vent! Please go to the web site at the bottom of this blog. The link will take you right to the Lifetime TV web site for the breast petition. You will need to fill in your name, address and e-mail address. That's it. It's so easy! I have made a post in Chat and Discussions about this too, under General Health Conditions.

Thank you.

The Future of Mastectomies...

From a nurse's perspective:

I'll never forget the look in my patient's eyes when I had to tell them they had to go home with the drains, new exercises and no breast. I remember begging the doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies. So there I sat with my patients, giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank You' they muttered.

A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a Mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery.

It takes 2 seconds to do this and is very important. Please take the time and do it really quickly! Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times. If you're receiving this, it's because I think you will take the 30 seconds to go to this website and vote on this issue and that you will recruit others to lend their support to this vital cause.

There's a bill called the Breast Cancer Patient Prote ction Act which will require Insurance Companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the 'drive-through m astectomy' where women are forced to go home just a few hours after surgery, against the wishes of their doctor, st ill groggy from anesthesia and sometimes with dr ainage tubes still attached.

Lifetime Television has put this bill on their Web page with a petition drive to show your support. Last year over half the House signed on.

PLEASE!! Sign the petition by clicking on the Web site below. You need not give more than your name and zip code number.
http://www.lifetimetv.com/breas tcancer/petition/signpetition.php
This takes about 2 seconds. PLEASE PASS THIS ON to your friends and family, and on behalf of all women, THANKS

I'm Back

2008-04-20T05:43:00Z

I left for a while, because of some really hateful comments made about me when I posted a problem I was having. I realized I have really missed this site. I love being able to help people, the nurse in me I guess. I think it is so cool to be able to give someone advice about a problem they are having or to just even say welcome to a new member. I am not going to let anyone run me off this site. I am here to stay. I have just as much right to be here as they do. They are going to get themselves banned if they don't stop what they are doing. I will never post a personal problem again on this site, but I may post a general question later on. I have a few in mind. I just posted some comments to the thread going on now about racial comments and should they be allowed. No, they shouldn't be I wrote, but neither should character attacks on people.

I cannot stand people who make comments about someone because of their race, religion, sexual orientation, etc. I have a niece and nephew who were adopted from Korea. They are now near 30 years old and have both had children with a white partner. Is that so wrong? Who knows if they are full-blooded Korean anyway. They were abandoned by their parents, so who knows? Who cares? They are people first, not Korean people first. So, they are not supposed to marry either, because someone else thinks they shouldn't? People are people, not just colored people, Asian people or Korean people. My niece has two children. a girl and a boy, and my nephew has a daughter. They are darling children. Does a person discriminate just against adults? It's not the child's fault they were born. But, when they grow up, it is then okay to discriminate against them?

Our society has come a long way, but it still has a long way to go. We are all struggling to survive in this world. People who make racial comments are really expressing a fear they have of that person or race. And they are also expressing their own inadequacies or insecurities.

Same thing with people who are gay, I have a gay cousin and she is my very best friend. I grew up with her and consider her my best friend. I don't give a hoot that she is gay. I support her efforts to secure a relationship in every way. Years ago, she had confided to a friend that she was gay and this friend betrayed her trust and told my counsin's secret to the world. I was the last person in town to find this out. No one wanted to tell me about it at first. Finally, someone did. I was not surprised really, I guess I always wondered. And I realized that I loved my counsin very much. It did not matter to me that she was gay. I had always wanted us to both get married and have kids together, but that's not the way it worked out. Now, I don't care about that. It doesn't matter. My cousin, myself and our friends have made a point to get together every few months and go out to dinner. We all have a ball. I love my cousin as my best friend and tell her so every time I see her.

"Live and let live" should be the motto of the world. I wish it was.

Have a good day and do a good deed today to someone in your world.

Becky