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“Antiphospholipid Syndrome and Lupus Anticoagulant”

This podcast is part of the Lupus Foundation of America‘s “Ask the Experts” series and was broadcast today. It is also available is also available in archives maintained by C-span for the public domain about Antiphospholipid Syndrome (APS).

Remember that in autoimmune diseases such as lupus, the body mounts an attack on itself, and in APS, the attack is mounted against phospholipids in our bloodstream. APS  is the condition that results when these cells are damaged during the attack. This damage can increase the risk of blood clots in lupus patients and putting the lives of pregnant women with lupus at risk as well.

APS isn’t limited to people who have an autoimmune disease; the general population can get APS, too. Often people who have APS need to be on anticoagulation therapy, such as Coumadin ™ for life.

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WALKING 3 MONTHS AND 7 MONTHS

Surgery to replace my ankle was EASY (who was I to complain; I was asleep)! Post-op discomfort was minimal and I received physical therapy twice a day after a few days.

But, for three months after surgery, I was completely non weight-bearing;  NONE, NADA, ZIP, ZILCH! Finally, the day came when I was able to stand;  was I weak or what? Why didn’t I connect the dots, then and there, and realize that 2 + 2 always = 4. Because of my age at the time and because my ankle was unstable, the surgeon didn’t want me to put ANY weight on it fors quite some time. 

Llittle did I realize, REALLY realize and understand, that the body needs weight-bearing activity to stay strong. I thought that my twice daily physical therapy, (after all, it was intense),  would do the trick and keep me strong. Not!

Why not? It wasn’t weight-bearing and nothing does the muscle more good than the strength building of weight-bearing exercise. Studies have shown that weight bearing exercise are superior to non weight-bearing exercises when it comes to function,  speed of walking, position (kinesthetic sense) and balance amongst other things. But, my surgeon had his reasoning for not wanting me to participate fully in physical therapy. This is one reason why people who undergo total hip replacements are at risk for falls if they don’t begin exercise in earnest soon!

Because of this, I didn’t listen to little ‘chattering monkeys that said, “When you’re finally able to walk, there’s going to be trouble!'”

Well. now I walk normally, but feel out of balance and oh, so unsteady. Completely recovered from surgery and in NO pain and sporting an ankle which on x-rays, CT and MRI study is fit as a fiddle, I’m still tremendously unbalanced. I saw the surgeon the other day, who is pleased as punch with my new ankle, but not so pleased that I need another course of physical therapy.!!

Take-home lesson? Will it happen to you? I can’t be the judge. But, if you have a joint replacement which requires non weight-bearing status for a while, this weakness and loss of balance is possible;  be prepared to work in physical therapy once you can put weight on the extremity! Do exercises with full awareness that if you DON’T, the profound weakness and balance problems may be a battle that needs to be fought for a while.

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Not easy Peasy!

Surgery was EASY (who was I to complain? I was asleep)! Surgical discomfort was minimal and I received physical therapy twice a day for three long months. 

But, those three months were complete non weight-bearing months for me NO, NADA, ZIP, ZILCH! Finally, the day arrived and I was able to stand/ Was I weak or what? Why didn’t I connect the dots, then and there, and realize that 2 + 2 always = 4. Because of my age at the time and because my ankle was unstable, the surgeon didn’t want me to put ANY weight on it for three months. 

Llittle did I realize, REALLY realize and understand, that the body needs weight-bearing activity to stay strong. I thought that my twice daily physical therapy, (after all, it was intense),  done in a wheelchair would do the trick, would suffice; and keep me strong. Not!

Why not? It wasn’t weight-bearing. Nothing does the muscle more good than the strength building of weight-bearing exercise. Study after study has shown that weight bearing exercise are superiorto non weight-bearing exercises when it comes to function,  speed of walking, position (kinesthetic sense), balance amongst other things. But, my surgeon had his reasoning for not wanting me to participate fully in physical therapy. This is one reason why people who undergo total hip replacements are at risk for falls if they don’t begin exercise in earnest soon!

Because I was confined to a wheelchair for so long, even though I got exercise, it could only compensate for the REAL DEAL for months and not able to put ANY weight on my ankle, I didn’t listen to those voices that said,, “When you’re finally able to walk, there’s going to be trouble!'”

Well. now I walk normally, but feel out of balance and oh, so unsteady. Completely recovered from surgery and in NO pain and sporting an ankle which on x=rays, CT and MRI study is fit as a fiddle, I’m still tremendously unbalanced. I saw the surgeon who is pleased as punch with my new ankle, but not so pleased that I need another course of physical therapy.!!

Take-home lesson? Will it happen to you? I can’t be the judge. But, if you have a joint replacement which requires non weight-bearing status for a while, this weakness and loss of balance is possible, so be prepared to work in physical therapy once you can put weight on the extremity! Do exercises with full awareness that if you DON’T, the profound weakness and balance probmay be a battle that needs to be fought for a while.

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Lupus affects my blood, too?

What, lupus affects my blood? “Stop the world, I want to get off!” Yes, lupus greatly increases your chances of having Antiphospholipid Syndrome.

Anti-what? Normally proteins in the blood bind to components of the cell wall (phospholipids). In lupus, the immune system mistakenly attacks these phosophlipids, destroying them and resulting in damage to the cell wall. Doctors call this ‘Antiphospholipid Syndrome (APS)’ or ‘against phospholipids. When this happens to the arteries and veins, blood clots can form, sometimes deep vein thrombosis (DVT).

When these blood clots travel, they can create other complications, including stroke, heart attacks, osteonecrosis and kidney problems. These will be discussed individually in other posts.

Not all lupus patients have APS, but it occurs in a significant number. APS can also affect the ‘general population’ and can affect their blood clotting, especially pregnant women.

Treatment of this disorder consists often consist of medications to prevent excess clotting, such as Coumadin (warfarin), Heparin or Lovenox and is often a lifelong commitment.

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“THIS IS LUPUS”

While writing another post, I came across this video, which, in 3 or so minutes speaks volumes about a lot about this disease:



 Support those who know no relief from this disease that can strike any place in their bodies:

You can help those ‘who don’t look sick’ and click the blue button below to be taken to the website of the

Lupus Foundation of America

http://lupus.org

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Walking 7 months After Ankle Replacement

It isn’t common, but it happens. My battle with osteonecrosis (ON) or avascular necrosis (AVN), began, not in my hips or knees, the most common sites for ON, but in my ankles. Walking to get the mail one day, I felt like there was ground glass in my left ankle. The pain stopped after a few days and started again after several weeks. This time, my left ankle felt like I’d broken it. I’d had a broken ankle before and I know what that felt like, so I can make that comment!

My doctor ordered an MRI which revealed ‘multiple bone infarcts.’ Being the inquisitive sort, and also having a background so that I could read the report and understand the ‘doctor-speak,’ I was able to reason out the rest and with the help of my doctor, learned over the course of years, the ‘ins and outs’ of osteonecrosis, so it didn’t terrify me!l

I learned that even though it was found in the ankle, it wasn’t that often. More often than not, ON made its first appearance in the hips and knees. Other MRIs over the years showed that it was in both hips, knees, tibias (Shinbone), ankle bones, heels and one shoulder. Mr. Yuck! I tried conservative treatments, but eventually had one knee, one shoulder and most recently (in 2013) my left ankle replaced.

Ankle replacements for osteonecrosis aren’t common, but I was too young not to do something. This surgery, normally a 5 hour procedure, took 2 1/2 hours. Not because I was a stellar patient, but because my ankle had so disintegrated such that the surgeon had a much easier time than anticipated in removing the necrotic bone.

Then it was sit and wait for a bit more than three months. I was in the hospital for 5 days and I was in a physical rehabilitation facility for THREE months! My husband and dog and home were 1100 miles away for Thanksgiving, Christmas and New Years, so I formed attachments with another family. I also had the added benefit of having lived for some time in the town where I had surgery; so I had a steady stream, sometimes revolving doors of visitors. But, truth be told, I was alone most of the time and became my own best friend.

Because I was isolated, I had nothing to do but work hard in physical therapy. Twice a day, for 2 1/2 hours each day, even though I was non-weightbearing and confined to a wheelchair, I lifted weights and did other exercises in physical therapy. At the end of the day, tired from work in therapy, I barely had enough strength remaining to eat dinner. In bed normally by 6 PM (yes, you read right!), I was awakened by the nursing staff at 9 PM and then reveille at 7 AM, only to repeat the same drill the next day-FOR THREE MONTHS.

Rehabilitation proved tiring (I think it was more boredom) and my body was trying to heal itself and bounce back from major surgery. Bounce back? That was something for 22 year olds. I’m significantly older than a 22 year old.

When the day came to see the surgeon again, my husband greeted me at his office to get discharge instructions. We hadn’t seen each other (husband) in three months and what a reunion we had at the surgeon’s office!

Suffce it to say I wondered why I was so weak. The docs didn’t answer that question,  but my physical therapist put it this way; “Annie, think of it this way: When you’re in a coma, you lose @ 6% of muscle tone and strength a day. Granted you weren’t in a coma, but you were in a wheelchair for three months, so cut yourself a little slack; give your body time to strengthen itself. In as much as I took that advice to heart and although I have a fracture in each foot, I am able to walk normally-or qt least much more so. So, here is a video of my walking, somewhat unsteadily, (but walking!) 7 1/2 months from my ankle replacement. My ‘new’ ankle flexes, extends, goes through all nothings except inward and outward motions. I can do most exercises except for running. The impact of a gentle jog was too much. But my muscles are so weak

But I can walk. No more ground glass. I had to learn to walk all over again and now I can walk 7 blocks in the neighborhood. Given that ankle replacement are in their infancy, I will say this: “Surgery is a breeze (You’re asleep!) and rehabilitation is easy (boring, but easy) and you need to work hard in physical therapy. But, I’ll say this: If I had it to do over again, I would”  Bottom line, the process was easy and lengthy.

I was asked to post a video when I was nearly 8 months from surgery. So, here it is.

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An interview-WITH ME!

By Maria Mongiardo
Annie is sixty-two and lives with her husband, Rey, in Colorado. Over the years, she was diagnosed with epilepsy, secondary Sjogren’s syndrome, fibromyalgia, lupus, and now complication of these. She has her own lupus blog called The Lupua Guru – Her blog is for people looking for information and advice on lupus and caregiving. She has been living an extraordinary life and shares her inspiring story with us.
How was your diagnosis made?
First, I was first diagnosed with epilepsy at age twelve, but like any kid, I did not think I was ‘different.’ In ways I didn’t know then, that was the first time my life changed. My Father and Mother saw to it that all of my growing needs were met; also, I grew up in a small town with understanding and extraordinary classmates.
Then, one eve in my junior year my life changed forever-again: I was leaning over the tub to wash my hair, had a seizure and hit my head on the unforgiving porcelain as I lost control and suffered major third degree burns. Rumor has it, that my Father, every bit the attorney, grilled the plastic surgeon about his abilities to save my life. At that time, people usually did not survive burns that I had. It was not long after that that my parents arranged tutoring for me, since I had to miss so much school because of reconstructive surgery. Despite my burn scars, I went to the junior prom with the ‘big man on campus,’ class president, and football star of any gal’s dream.
Then, my life changed again when my Father died quite early in life and quite unexpectedly. (how many times can a life change?). I was too young to absorb the meaning of the loss of my father, though I eventually felt the impact and it became one of the greatest losses of my life. I had grown accustomed to more attention from Mom and all of a sudden that attention was rightly divided as she had the responsibility of raising and putting all of us through college.
Then my life changed again.I was diagnosed with Sjogren’s Syndrome while in college, when I had mumps a bit too regularly; an astute clinic physician diagnosed parotitis, a hallmark of Sjogren’s syndrome and referred me to ENT which confirmed After a lip biopsy and other tests a diagnosis of Sjogren’s was made when I was about twenty.
Mom took charge again and saw to it that the medications for epilepsy were changed because my seizures were not controlled. She wanted me to have the life that she and her husband had envisioned for me. Seizures stopped as soon as med changes were made and, boom! I went to nursing school, moved to Chicago and began to LIVE!
My life changed yet again when I was diagnosed with lupus in 2002. With this diagnosis, my rheumatologist explained that it was a mixed connective tissue disease, which knows no bounds as far as the complications I could experience, I was granted a full disability in 2003. We then moved to Virginia for a better job opportunity for my husband and refinished an old house. No sooner did the final coat of paint dry, than Rey called me and told me that he had lost his job. But another job opportunity awaited us in Colorado.
What is your support system like?
For many years I have had tremendous support from my husband who at times has had difficulty understanding what I have had to go through. But for the most part he has always been there as have several very close friends and family. But, it’s hard, because everyone has his/her own life. Part of my issues have been how I emotionally have had to deal with what others have thought of me. As I have gotten older those feelings have not subsided. So my support comes in spades from my tremendous husband and all the wonderful friends I have made along this journey called life.
What do you do for work now?
I co-moderate an online support group for osteonecrosis (avascular necrosis). I edit and review books, was a freelance writer for eight years for national nursing magazines and I have my blog at http://lupusguru.com where I use my background in nursing to discuss topics related to lupus and put them in words that are decipherable to the many who have lupus or the caregivers for someone with an autoimmune disease.
Anyone with chronic illnesses knows that keeping ‘ologists appointments, having regular diagnostic testing, filling medications and all the pressures of this, the physical therapy that may go along with this-can take up too much time or sometimes be a full-time job, making you feel like a perennial patient; not a good feeling!
Do you take any supplements?
I tried acupuncture, Chiropractic was minimally effective, special diets and counseling to get over the many losses I would experience in my life. Counseling was most effective until I found out that the counselor did not HAVE A LICENSE TO PRACTICE! I just tried started to try some essential oils, researched carefully by a nurse friend who knows of my medical condition. Massage only felt good for a short amount of time, but had no long lasting effects, so I am back to only medications.
How do you stay so positive?
I have some wonderful friends; and what is to be gained by being negative, anyway? One of my friends said to me once; “it’s okay to get on your ‘pity pot,’ once in a while;” but “you need to give it a statue of limitations.”
Has lupus affected your marriage?
Other than the recent financial problems, it has strengthened our bond. I was a real active, type A personality and Rey was a type B personality. Before we married, it was agreed that I would slow down a bit and he would pick his tempo up a notch. ! My having lupus has forced him to become closer to the type A mode, because he does all the shopping, all the cooking, most of the cleaning, yard and heavy work around the house: I’ve given him the honorary type A title! Those things (shopping cooking, cleaning, etc.) are things that I would normally do, that I used to be able to do, and would love to be able to do; and now, because I can only do them on a very good day. I feel less a woman, less of a wife. Men, please realize and understand that your wives may feel this, too.
Any advice for people who are married?
The advice I have is for couples who are considering marriage; think about those vows BEFORE you marry, and think how you would react if the ***t were to hit the fan. Really think about the “for better, for worse, in sickness and in health, forsaking all others, till death do us part” part. What if your caregiver got sick? What if you found yourself in the same boat as Rey and me? Claws can come out. During your marriage, something will, maybe not lupus, but something else, possibly more tragic or probably less tragic can happen. If you are not 100% sure that you’ll stick around, do not take the vows. It is not right, nor is it fair, nor is the LOVE real. Remember, it could be you who gets sick and needs help.
Do you have any advice for people with an autoimmune disease?
My advice for people who have an autoimmune disease is to hook up early with a good rheumatologist as soon as you can and learn as much as you can about autoimmunity. This does not need to be all-consuming, but can I suggest a few good reads? “The Lupus Book” A Guide for Patients and Their Families, “ “The Lupus Encyclopedia” by Donald E. Thomas MD and “In Your Own Hands” by Larry Berkelhammer, PhD. The last book is great reading for those who realize the power of the connection between the mind and the body, but ALL of the books are excellent and well sourced. On my these pages, soon, I’ll be writing a review of the 2 latter books.
Is there anything else you do to stay healthy?
I have become the worst at this. I always used to eat and sleep well when I was younger; well, sometimes I missed out on sleep when I partied too hard, but by and large, I was in good shape as a triathlete (Was I good? That doesn’t matter!).
I hooked up with a physician years ago who felt a strongly about the connection between the mind and the body, and it was in teaching one of his classes that I met my husband. But what do I do to stay healthy now? Not as much as I should; the caregiver in me makes sure the needs of others are met BEFORE I meet mine. I have learned how to tell my husband what makes up a well-rounded meal! I participate in “Silver Sneakers” classes, offered by many insurance companies. I know, that’s not enough, but I am also receiving physical therapy for an ankle replacement that I had last October 2013 that sort of precludes strenuous exercise.
Is there anything you specifically would like people on lupuschick.com to know about your fundraiser?
I would like people to know that we planned for our financial future BECAUSE we knew I did not have a great health history and because of my being a nurse, we had an idea of certain worst-case scenarios that could play-out. We knew complications could arise for which we’d need extra money. We planned for long-term care and thought we had most bases covered. But, as John Lennon said,‘ Life is what happens when you’re busy making other plans.’ We planed on unemployment for as long a year, but not three and a half years and we didn’t foresee bankruptcy!
The fundraiser we set up is on GiveForward, an organization based in Chicago. Their mission: to promote medical fundraising. We need to raise money for bills that relate to lupus, medications I take for lupus, Sjogrens and epilepsy and problems they can pose-or medications for them can pose. Our specific site is:
https://www.giveforward.com/fundraiser/xfl4/annie-s-autoimmunty-and-rey-s-move-fund
It is HARD is to appeal to you and to others who don’t know us for help. But, I know if the shoe were on the other foot I’d try my darndest to help others. There is something lupies do: we stick together! Can you help Rey and me start over by donating to our fundraiser? Can you forgo a dinner out, a night at the movies or a movie rental, a few lattes, and donate to our fund? We would be forever in your debt. We need money to pay for a move to where we think there will be more jobs and all relocation expenses, first months rent and security deposit. We know competition for jobs can be stiff; but at least there will be jobs. At our site, there is an online donation form, though, if you are uncomfortable with giving information online, contact me at anowlin7@gmail.com and I will give you my snail mail address. I NEVER thought I would be starting over at 62!
We’ve received donations from people we don’t know. That in itself is so heart-warming. that I don’t know how to express the feeling; but how do you write a ‘thank you’ note to someone you don’t know?
What would you like to see on a website such as lupuschick.com?
In addition to the tremoundously well-orgnized autoimmune/lupus and resource information, I would like to see a financial planning section and a WHY it is so important that people with lupus or another autoimmune disease plan for their financial future, no matter how big or small their income. I should think that CFPs would be only too happy to contribute and they might offer free consults. One last thing for all you lupuschick readers: plan, plan, plan, and revise that plan.
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