Bob Saget: He Knows Scleroderma

So, maybe you’re skeptical about hearing what Bob Saget has to say about Scleroderma.  Maybe you’re thinking,  “What could an actor/comedian possibly have to contribute to the scleroderma patient community?”

Well, for one, he lost his sister to the disease.  Also, he’s on the Board of Directors at the Scleroderma Research Foundation.

Sure, scleroderma is hard for patients, but what about those who love them?  The truth is, it’s just as difficult for them to watch, as it is for us, the patients-  to  fight.  I don’t mean to make the patients’ fight appear less painful or easy.  Let’s face it, patients know how painful it is and I am stating the obvious.  My point is about the emotional pain of having to sit and helplessly watch someone fight one battle after another  for their life.  Sometimes, those doing all they can possibly do, have to watch those they love lose their fight.  Like many brothers would do, Bob Saget did all he could to help his sister, yet still lost her to Scleroderma.  Bob Saget is not alone.  He just happens to have a microphone and a camera and is using them to raise awareness and funds for research.

I have one brother and one sister.

Karen Vasquez with her brother and sister at a caping trip circa 1996.
Me, my brother & sister circa 1996 before the free face lift and nose job. It’s the Scleroderma Gift With “Purchase”

I am also a member of an insanely large extended family that requires a map for visitors when they dare come to a party.  My family and friends  love me very much.  Since my diagnosis in 1994, they have been doing everything they can to help me.  It is hard for me to watch them feel helpless.  I feel loved but I also sense their frustration.  As a parent, if my son had to fight a disease, I would cut off any part of my body or gladly take his place to make him well.

Friends and family members need a cure just as much as patients who have scleroderma.  Bob Saget is going to help get the message out.  Tune in this Thursday at 11AM PDT. I will be watching and listening  You’ll need a phone and an internet connection.  Visit the Scleroderma Research Foundation’s website to register: www.sclerodermaRESEARCH.org.

 

Did You See The Size That Blog Roll?

I am loving the changes to The Mighty Turtle. One thing I would like to point out is my Blog Roll. It’s not just for the Chronically Awesome, Spoonies or anyone chronically ill. There is more to us than our diagnosis. Right now I have a list of things that interest me. Are you a blogger or know a blogger who might like to be added to this blog roll?

After setting out to blog in 2009 about Scleroderma and Sarcoidosis I learned that many Autoimmune diseases, cancers and chronic illnesses have similar symptoms, personal challenges and mental health issues patients cope with every day. In short: We have different diagnoses, we cope differently and we have a great deal to learn form each other.

At first, I tried to think of a way to have different bloggers for different diseases, but let’s face it: I don’t have the organization skills for that. Also, I need to take care of my health and family. I want to have a life and write. I read so many wonderful blogs, I thought it would just be best to have a list with links.

I am happy to list anyone who wishes to be listed on my blog roll. There are already blogs there that are not about chronic illness but talk about politics, parenting, daily life- things that have nothing to do with our illness because we are not our diagnosis. After years of therapy, I found my biggest problem was I could not separate my “self” from my diagnosis. So, I want to include topics in addition to being ill and having symptoms

Here are the rules about blogs that will not be posted on my blog roll:

1. Snake Oil: There are no miracle cures for anything. If a products works for a person and helps them, great. I want people to talk about things that work for them and name the products if they wish; this includes alternative therapies. But any mention of miracle cures will not be tolerated.

2. Bigotry will not be tolerated.

3. Harassing other bloggers or patients: I post these blogs on the blog roll but I cannot police them all the time. Please let me know if any blog listed on the blog roll harasses you or anyone else.

4. We are NOT turtles: The Mighty Turtle is a symbol of our ability to adapt and overcome. There are enough communities with nicknames. We are individuals that belong to a community: The Human Race. (Just wanted to clarify that one.)

My goal with The Mighty Turtle is just to provide a place for people to find others they can learn from and collaborate, ask each other questions, follow each other on FaceBook, Twitter and/or Google plus and anything I missed. We are in this together and with enough voices, we can be heard. Together, we are stronger.

Thank you for reading. Again, if you are a blogger and don’t see yourself on my blog roll go to “contact” and send me your links. If you feel like it, tell me a little about you and say hi.

A moment of Young Guns: The title of this post was inspired by a famous scene from Young Guns. Click and enjoy:
“Did you see the size of that chicken?”

Spoiler Alert! The First in a Series of Scleroderma Surprises: Raynaud’s Phenomenon.

If you would like to be surprised about some weird things that MIGHT happen to you as a Scleroderma patient this post is not for you.  In addition, if you are  enjoying a meal or snack and are a bit squeamish, I recommend you finish eating before reading.  You have been warned.

So, you have already experienced the biggest surprise of your life, you have Scleroderma.  It was not much of a surprise something was wrong and there had to be a name for it.   You just had no idea it would be something most people have never heard of, can define or pronounce properly.  The good news is, if you like surprises, then Scleroderma is the gift that keeps on giving.

Please remember, I was diagnosed a long time ago.  Back in those days, Pluto was still a planet, Seinfeld was new, and OJ had yet to make car chases a national pastime.  The things that happened to me are based on medical treatment from that time period.

Thanks to non-profit organizations like the The Scleroderma Research Foundation and the  Scleroderma Foundation and the research and education they fund,  the condition I will be describing is treatable and preventable  If things happen you can’t control, as they are will, remember one of the most helpful things you can do is remember that Scleroderma is tough, but learning to laugh at what scares you makes it easier and it will only make you stronger.

Raynaud’s Phenomenon: Surprise!
Normally, when we are cold, the muscles around our blood vessels gently contract and restrict blood flow to the extremities to preserve blood flow to vital organs.  This response is controlled by the sympathetic nervous system known as part of a “fight or flight” response.  Raynaud’s Phenomenon is when the muscles around the blood vessels respond to cold not by gently contracting, but by contracting so hard and fast, blood flow can be completely stopped in an extreme Raynaud’s attack.  When I think of the muscles constricting my blood vessels, I think of Homer Simpson’s discipline technique with Bart that usually begin with, “Why you little…”.  (Yes, I picture a tiny Homer Simpson choking my blood vessels with tiny four-fingered animated hands.)

With this natural response gone wild, your extremities will do some crazy things.  For example, your fingers will begin to feel tingly and numb.  Then they will turn red, white, and blue.  It almost sounds patriotic, doesn’t it?  I could say it makes you truly American, but Scleroderma has no international border.   When blood is unable to get to the fingertips, skin cells begin to die, but before this happens, there are now medications available to open the blood vessels and bring blood to those malnourished cells.  If this response does not respond to treatment or is allowed to progress untreated, sores will begin to appear.  These sores can last for weeks or months depending on care, or just how stubborn the muscles are around those blood vessels.

Once those muscles around the blood vessels relax,  the sores begin a slow healing process.  Now here is the freaky part.  After they heal, a scab of dry skin is left behind. The hard dry skin will snag, sometimes dislodging the hard dry skin and fall off and it won’t be painful.  Most of the time, you won’t feel it unless it is still in the process of healing.  Yes, I just told you a small dry chunk of skin will fall out of a once uber painful sore and you may, or may not feel it.  The cells beneath the dry hunk of skin have blood flow and are growing in to fill the hole, pushing out the hunk of dry skin.  When this hunk falls out, it will  leave a gaping hole.   You will be able to look inside a small hole I can only describe as looking like a nail taken from a wall.   I have experienced sores that have left a hole in many a knuckle and fingertip big enough to put the tip of a screw in without touching the walls.  Don’t worry, eventually, these holes close as the cells regrow tissue. (See picture)

Each of my knuckles has had 18 years of sores that have been open and healed. The number of sores I have had on this hand alone is in the hundreds.  As you can see, the holes are gone and there is healthy tissue in its place.  You will also notice there are healing wounds on my index finger knuckle (bottom of picture) and another on my pinky finger knuckle.  These sores are impact wounds.  Because of the claw-like deformity of my fingers, sometimes I get in my own way and bump into things.  A long time ago, these wounds would have taken months to heal.   The dry scabs still happen, but because of medication that keeps my Raynaud’s under control, my wounds heal much faster and the chunks of dry skin falling off happen less frequently.  Because of the stability of my condition and my experience with wound care, these impact wounds take much less time to heal.

Now, you may be asking, “Karen, what is it you want me to take away from this surprise? This sounds insane.”

This may not be much of a surprise, but it won’t be the first time I’ve been thought of as insane or unstable.  Please rest assured, I have been tested by more than a few psychiatrists and I’m coming up on my “Crystal” or 15 year anniversary in therapy.  I have the documentation to prove I am quite stable.  When it comes to Scleroderma, stick with me, you are in good hands.

I want you to take away two detailed important points about living with Raynaud’s:

1. Take care of yourself and take your medications as directed.
Reading about my experience with Raynaud’s and what it has done to my hands may be overwhelming to anyone who has it, but it is worth it.  Here are some tips:

A.  Keep your core warm.  I have a three layer rule:  Undershirt, overshirt and shell (something removeable like a cardigan or hoodie.)   In extremely warm weather I still wear two shirts. (A bra does not count as a layer.) It helps when transitioning between extreme hot and cold. Outdoor to indoor air conditioning can trigger a Raynaud’s attack.  This is where the shell comes in handy if the two layers do not help.

B.  Stay away from caffeine.  Caffeine is not your friend.  Coffee is a harsh mistress.  I am in no position to judge.  Decaf or moderation helps.

C.  Exercise.  As much as you can, move.  It gets your blood moving and opens blood vessels to get blood to those cells.  Don’t beat yourself up if you are not very mobile.  Talk to a physical or occupational therapist about exercise that will help with mobility of your fingers.  The exercises they assign have an additional benefit of an increase of moving blood to those fingertips.  If you are very mobile and you are not exercising, start.  Find something you like to do and stick with it.  You are more likely to stick with it if you enjoy it.  The Wii Fit is a great place to start. It got me going and Jules herself is using it to get started.

2.  Scleroderma is full of surprises.  Don’t panic.
Parts will come and go.  Most of the time, they grow back.  Take care of yourself.  You are not your disease.  Find humor when you can.  It will help distract your mind from your pain.  It sounds impossible, but it is not.  You will find strength you never imagined possible- and yes, it’s YOUR strength.

 

Observations and Musings as a Guest of “Hotel” Veteran’s Hospital

Observations and Musings as a Guest of “Hotel” Veteran’s Hospital

August 17, 2011
If you follow me on Twitter or Face Book,you already know I was admitted as an inpatient to the Veteran’s Hospital near me. It’s where I get my prescriptions filled, tests done and meet with 1/2 of my treatment team.

My treatment team consists of an internist, rheumatologist and podiatrist here at the VA. The leaders of my treatment team are a rheumatologist that specializes in Scleroderma and a pulmonologist, both at UCLA medical Center who oversee my treatment and to whom I take my most acute and baffling symptoms. How do I have such a well rounded group? I could say I am one of the lucky ones, which I know I am, but I fought tooth and nail to get here. I blog about my experiences of the last 20 years of symptoms because I believe we all should be as lucky as I am when it comes to healthcare.

I am a 100% Service Connected Veteran. What does that mean? The short answer is I developed symptoms of a condition as a result of my service in the military. After that, there is no short answer.

My VA benefits are based on my health condition, not rank or time in service. The symptoms of Scleroderma were documented while on active duty. Thanks to food poisoning from a Long John Silver’s take out meal, a physician at North Island Naval Air Station in San Diego observed my hands turning blue. After months of reporting my blue hands in 1993, I was no longer considered a sick bay commando, crazy or an hysterical female. It was noted in my records, tests were done at Balboa Naval Hospital with all results coming back negative. I was told to stop taking birth control pills and cut down on my caffeine intake. (At the time I did not drink coffee). Twenty years later, I still have yet to find any correlation between birth control and Raynaud’s, but that’s a whole other post. After my four year hitch, I moved to La Crosse, Wisconsin. The nearest VA Hospital was in Madison, 3 hours away. In October of 1994 I was diagnosed with Scleroderma based on my blood tests and one good look at my nail beds. After submitting my paperwork three times with guidance from a Veteran’s Service Officer and a letter to my Wisconsin Representative, I was finally given a 100% Service Connected rating. It means I am never turned away at any VA. All medical conditions the VA does not treat directly such as pregnancy, are paid for by the VA to the doctor and hospital of my choice. Because of the VA, my son and I are still alive because I was able choose to go to the best hospital when HELLP Syndrome struck in my third trimester (which is also another post).

I am able to see the doctors at UCLA because I am have Medicare and Social Security which I began paying into when I was 15. In 2005, my rheumatologist here at the VA had run out of treatment ideas. My disease was starting to progress quickly and he referred me to a colleague at UCLA. In 2007, after years of shortness of breath being written off as just another symptom of Scleroderma, I paid a visit to UCLA ER after receiving a radiology report that recommended, “Check for Lymphoma” My pulmonolgist immediately ordered a PET scan, which tested positive in my thoracic lymph nodes. They were enlarged, which explained the difficulty breathing. A biopsy was done and behold, my Sarcoidosis diagnosis. I was immediatly given Remicade. Had I been diagnosed at the VA, I would have been forced to go the formulary route. That involved trying and the failure of three other medications before I would be given the Remicade. It turned out Remicade keeps both my Scleroderma and Sarcoidosis from getting worse and after years of trial and error, I have a good prognosis and treatment plan that is working.

For those of you applying for service connected ratings, it is not an easy path. No one should have to fight for medical care- ex-military or not. Unfortunately, it’s a journey we must take. For those of you fighting; don’t give up. You must be your own advocate because you are the best person for the job. Submit and resubmit requests for disability ratings. In a profit driven healthcare stem, getting the proper care has become a war with many battles. Veteran’s healthcare is socialized healthcare. It works. Unfortunately,profit driven companies are gaining from the sufferings of human beings. To them, it’s not about what’s best for the patient. It’s about how to move product. I say companies because medical practitioners and staff should make a more than fair wage. These people put in mind bending hours of study and work that is always evolving, hence the term, “Medical Practice”. Companies that pay dividends to shareholders- success is measured by their bottom line, not the success of treatment. That too is also a whole other post.

Tonight, I am writing from my hospital bed at the VA and the point of this post was originally to talk about the bond between Veterans. I feel an explanation of how I am able to get such great care is important. Not just for this post, but for anyone trying to get medical coverage through the VA or any other means. This has become a more detailed post than anticipated. I have many observations and I look forward to sharing with you during my stay and after I return home.

Thank you for reading and thank you in advance if you decide to share this post.

My Remicade Infusion Cost $22,000 in 2007

Yesterday, I had an infusion of Remicade that in 2007 cost $22,000. (I saw the cost on my insurance statement back in 2007.) Remicade with Methotrexate suppresses my immune system to keep Sarcoidosis and Scleroderma from progressing further. In other words, they keep my chronic potentially fatal diseases from killing me.

 

Today, I have three doctor’s appointments three days of this week. I have tried to volunteer at a local non-profit and I felt like a flake because I am constantly sick or have doctor’s appointments. I am one of the lucky ones. Most people have to work to keep their medical benefits so they can afford their medications and go in sick because if they loose their jobs and benefits, they will die without their meds. (I was going to revise that last sentence, but I’m kind of proud of that run-on)

 

Everyone should have the healthcare I do. I am a 100% Service Connected Veteran and I am lucky enough to qualify for Medicare. Medicare made it possible for the Doctors at the VA to refer me to a specialist when they had no idea how to treat my condition. I will elaborate more in another post, but I need to get to my doctor’s appointment for some routine poking and prodding- and no, no one buys me dinner after. I wouldn’t have time anyway, I have too many appointments.

 

If you haven’t had the chance, please read and share this article I submitted to But You Don’t Look Sick.com

 

I was informed thatyesterday was World Lupus Day, but other websites say it’s May 12th. I’m so confused. I won’t be confined to an easy chair and IV on the 12th as I was yesterday, so I may not be as tweetey, but I will do my best.

 

If you feel like it, do a search on Twitter for #WorldLupusDay. You may find some fun facts (or just facts depending on your sense of humor). Yes, I know this is a blog about Scleroderma and Sarcoidosis, but it’s all autoimmune baby! Research and breakthroughs with other diseases open doors for better treatment and the possibility of a cure for all diseases. Together, we are stronger.

Thanks for reading and have a great day everyone.

Our 20 Year Anniversary. Yes, Me and Raynaud’s: Here’s some Ideas From an Old Couple.

Yes, it’s been 20 with Raynaud’s. Here’s a timeline list.

1992. My doctors didn’t believe me.

1993. My Doctors were not sure what the hell it was.

1994. Congratulations! It’s Scleroderma! CREST is not just my favorite toothpaste anymore.

2008. Viva Viagra!

2012. Happy 20th to me and my  Raynaud’s symptoms! (Do I register at Macy’s or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud’s is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn’t matter what climate you live in, just take precautions and be plan to be cold all the time. It’s a real timesaver.

2. Tune out people who tell you just because they aren’t cold it means you are just “oversensitive”, because they are uninformed and believe they are helpful.  Remember THEY believe they are helping you.  I know it’s difficult, but I have to tell you receiving stupid advise from well meaning people becomes easier with time.  The sooner you let it roll off of you, the better you will feel.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud’s attack. Bringing having  a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are covered in comfy socks, my core temperature stays consistent.

5. If I have a Raynaud’s attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else’s (They are usually warmer)

6. When having a Raynaud’s attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages are helpful for me .  Scleroderma is not a one-size-fits-all disease and always ask your doctor f massage is right for you .  Massages can be expensive.  I have found Massage Envy very affordable and their therapists are well trained. Never be afraid to ask about a therapist’s experience. ALWAYS observe their cleanliness practices and don’t be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a “discount”  place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn’t always mean they are consistent with cleanliness practices either. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don’t be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage helps quite a bit on my hands and feet,but before you even get a massage anywhere on your body ask your doctor first.  Oh and during a pedicure, If someone ever pulls out a razor and tries to “trim your calluses” with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only person that should ever use a razor to trim back calluses.  Your podiatrist can show you or a loved one how to do it at home.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven’t tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran’s healthcare, which is even better.) and a private OT chain treated me like a cash cow. It wasn’t the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.  The right occupational therapist will teach you many useful exercises and prevention tips.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. The very best thing that helps keep my Raynaud’s in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son’s not here, my dogs will at least keep me company. They look at me like I’m crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don’t be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.  (Good God!  James Brown’s Celebrity Hot Tub Party)

16. Moisturize.  For me, Kama Sutra Oil* is the only thing that keeps my the skin on my hands and from cracking. The skin on my fingers is scar tissue and  their Sweet Almond Oil seems the most effective for me.  It’s not just for hot monkey love.

So those are my tips.  If you have any to add, please leave them in the comments section because my way is not the only way.  Living with Scleroderma isn’t easy, but it can be done.  It takes a lot of patience, some sedatives and some good old fashioned stubbornness, but it can be done.  You may have Scleroderma, but Scleroderma does not have you.

*Update, June 3, 2014:  I have found in addition to Kama Sutra Sweet Almond oil;  Cetaphil, Amore D’Or or Tarte D’Amande by Votre Vu, or a good “dry” body oil to be effective moisturizers as well.