Scleroderma: Part of The Adventure

Three children and a woman.

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves.

Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the definition of remission does fit, and it doesn’t say permanent or temporary, remission is accepted as ceasing of the symptoms.  It fits when referring to cancer.  The cancer is somehow eradicated by treatment, and while in remission, patients do not experience symptoms of cancer.  The difference with scleroderma is, that scleroderma may run it’s course, or symptoms may be controlled by medication, but blood work, and symptoms show scleroderma is present.  The best term I have heard so far in reference to this is referred to as a “holding pattern” by patients and their doctors.

For me to say that I may be in remission is incorrect.  Symptoms will flare.  I will still have good and bad days.  When I spoke with my doctor I was elated that I may have lived long enough to be through the worst of scleroderma, I threw around the word remission, carelessly.  I apologize to you, who are kind enough to read my work regularly, and new patients looking for information.  I was talking about scleroderma incorrectly, and  I am s very sorry.  Of course, I still have sarcoidosis, but it’s symptoms are very mild for me.  I write more about scleroderma, because it’s just more aggressive in me than sarcoidosis.

I was very swept up in the possibility.  One of my best and worst coping mechanisms, is denial.  Like all patients with a chronic illness, I do not want to be sick, labeled as sick or live my life as if scleroderma defines me.  It works well for me, until I get swept up, as I did with the word, “remission”.

The last few weeks, I have been working through depression.  It is something that affects me more than scleroderma, in body and mind.  Scleroderma is a life-long commitment no one volunteers for, but we can choose how we cope with it.  A friend of mind gave me a name for my technique, he told me I am like Lt. Dan, from Forrest Gump.  I liked that comparison because it felt like it rang true.  Like Lt. Dan, I am angry about what life has handed me.  I never ever want to be referred to as handicapped or disabled, and don’t get me started with God.  I of course will not climb up on a shrimp boat mast and curse God during a hurricane, but I am certainly not going to worship God or pray.  (That’s a whole other post.)  For me, accepting scleroderma will always be a part of my life is a sore spot, but I do it.  That may be why I have a great deal of patience with everything else. Traffic or long lines seem like minor things, and a waste of time to get angry about, because eventually a long line will move.

Scleroderma has taught me to live in the now.  I am not in remission.  I may be in a holding pattern, but I will need infusions and medication for the rest of my life- and it will not be cut short.  That may seem unrealistic, but to me that is one thing that is not.  Scleroderma, childbirth and a severe head injury have thrown a lot at me these past 43 years.  I have a lot of life left, and there is treatment for my symptoms.  I will continue to work hard to stay healthy, which we all need to do, scleroderma or not.   I have not yet reached mid-life.  I have a ten year old son, and I plan to see him walk on Mars, and meet his children.  Life is full of obstacles. I choose to make obstacles, part of the adventure.

Yoga with My 87 Year-Old Aunt Is Awesome!

I had a fantastic holiday weekend.  I hung out at my aunt’s house in Lancaster for four days with my Aunt Carmen, and ,cousin Karen (yes, she is my namesake.)

I have always looked up to my cousin Karen.  The first time I visited her home in San Jose as an adult, was in the 1990’s.  It was surreal for me to be doing grown up fun things like drinking margaritas, and laughing until the late hours of the morning. with her  Karen is actually my dad’s first cousin, she was an adult when I was born, but the years did not keep me from somehow inheriting  a lot of her personality traits.  The good, the bad,  and the crazy.   This past Saturday night together, we laughed because back in 1995, we were drinking tequila shots at 11:30pm, and this time at 11:30 pm on a Saturday night,  she was removing a knife I had lodged in a Granny Smith Apple.

We spent three days lounging and visiting while  watching CSI Miami.  I had never seen CSI Miami before, and  my favorite part is the beginning of the show.    Horatio (David Caruso) begins a comment, puts on his sunglasses, makes a potentially  profound statement about his comment, followed by the primal scream in the show’s theme song, “Won’t Get Fooled Again”, by The Who.   I wish I could find a way to have the scream cued up and play, every time I put on my sunglasses.  *sigh*

During my research of Horatio’s sunglasses, I stumbled upon the top 10 Jason Statham moments on YouTube. The only thing better than a Jason Statham fight, is a Jason Statham fight when he’s wearing only boxers.

What were we talking about?  Oh yeah, Yoga… with my Aunt Carmen {puts on sunglasses and walks away.}

That Monday morning following the  relaxing weekend, my aunt and cousin invited me to join them on their adventures, which turned out to be a healthy routine I envied.   At 9am,  I found myself in a senior citizen’s stretch class with my cousin Karen.

Click to see the clips… They only gets funnier  

Last year at this time, I was doing Krav Maga classes.  That 45 day hospital stay really took a toll on me and now, I’m easing into activity.  Last year, I would have punched you in the neck, Jason Statham-style, if you told me I’d be in a stretching class for seniors.  Stretching is stretching and these seniors had a great program that would give a few 20-year-old I know, a run for their money.  I have always looked up to my cousin Karen.  This was the first exercise class we had ever been to together, and I was happy she invited me to go along.

About 15 minutes into the class, not only did I realize I was probably the only person wearing thong panties, I became acutely aware of how inspired I was by my fellow students in the class.  My biggest fear in the early years of my diagnosis was that I may not live to be a senior citizen.  Today, this rag-tag group of perky seniors gave me hope.

There are many things I have resented about having a progressive, degenerative illness at a young age.  I missed 7 years of my 20’s and spent all of my 30’s in doctor’s offices, hospitals and physical therapy rehab office visits.  But, I lived to tell about it.  Now I’m in my 40’s and I feel like I have my whole life ahead of me. I miss my 20 year old body, I’m not the first person in her 20’s to be ill and I certainly won’t be the last. And today,  there I was stretching with some old people and felt comforted that there was something I could do about my health. The students in this stretching class really stoked the fires of my inner control freak, and it was a great feeling.

There were cancer survivors, a 92 year-old women who still drove herself to the Senor Center every day, and there was my awesome cousin working hard to keep herself healthy, and able.  This health thing does not happen by sitting around.  You have got to get out and leave, especially when it’s hard.

Recently, my Aunt Carmen was unable to walk because her muscles had atrophied as a side effect of some medication.  She spent some time in a rehabilitation facility, where she learned to walk again.  When she returned home, she didn’t want to go anywhere, but my cousin Karen, got her moving.  It would take lots of convincing to get my Aunt Carmen in the car, but luckily, my cousin Karen is very stubborn and wouldn’t take”no” for an answer. When they would return, my aunt felt significantly better.   Now, these two have a great thing going on every day- and today, I had the privilege to join them on their Go-Go-Go! adventures.

After walking our dogs in the park and stretch class with my cousin, we ran back to the house to pick up my aunt for chair yoga at their local wellness center.  By the way, these activities are free to them, thanks to Medicare.  When we arrived, well- my cousin Karen has this amazing outgoing personality and of course, she gets that from her mom.  These two just light up a room.  I hadn’t seen my aunt this active in ages.  She introduced me to her friends, showed me around and then we took our chairs in the activity room.

 

We did some Thai Chi, then sat down on metal folding chairs with big comfy cushions.  Chair yoga gave me quite a work out and I felt so relaxed after.  The best part, was doing chair yoga with my 87 year old aunt and my cousin (who would kill me slowly and painfully, if I disclosed her age).  Three generations doing yoga together, so we could all be together, longer.  You’d think I would have taken a picture, but no- we were just to busy enjoying ourselves. And you know what?  I almost did not go to visit my aunt and my cousin, because I didn’t feel well.  I haven’t been as active as I used to and I get tired easier.  Or at least I used to.  Hanging out with my Aunt Carmen and my cousin Karen, was just the kick in the pants I needed.

So, if you have scleroderma, sarcoidosis or any debilitating disease, and you turn down an offer to go somewhere and do something, please reconsider.    It is hard not to be discouraged by pain.  And things will not always go as planned  It may be hard to get out.  It may be hard to move when you get there, but don’t pass up an opportunity.  You may be sore when you get home, and have to rest, but getting out is worth it. Life moves pretty fast.  Don’t miss it.

Editing note:  I originally published this post spelling Tai Chi, Thai Chi.  I left it, because it’s funny.  ~K

 

You’re welcome.

 

 

 

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone with my dog.

 

Tomorrow, I have an appointment with my rheumatologist at UCLA.  Today, I spoke with my primary care provider’s case manager (At the VA Hospital) and arranged to pick up my most current blood work.  I am really liking the VA in Long Beach.  The case manager wants me to contact her tomorrow morning with my doctor’s recommendations.  I do miss the rheumatology department at Loma Linda VA, but driving less was worth the move.

 

Today, I finally accepted what I already knew:  That I do not need a home health  care worker here with me 6 hours a week.  I’m too active now, which feels very good.  When I have to rearrange my schedule to be home to have help, I don’t need it.  I need someone to clean for me, not take care of me.  That’s a huge milestone.  After 45 days in the hospital and weeks of recovery, I’m now too active to have a nurse come over and that feels very good.  I know my family may be reading this and cringing, but they already know I’m not good at sitting still.  Today, though a Monday, was a great day!  I cleaned my own apartment.  The living room no longer looks like a laundry station.  My dog is exhausted and walked.

 

I gathered my test results and read my doctor’s notes from my last appointment.  My prognosis was good with a balance of diet and exercise.  I feel well most of the time, but I can tell my body is dragging from not exercising.  That’s really the last piece to pick up after that 45 day interruption.

 

So, tomorrow is the big day.  Back for my quarterly check up with my rheumy at UCLA.  Things are looking up.  Now the trick is to keep it going,  but hope is afoot and I think I have some great times ahead.  After being diagnosed with scleroderma 20 years ago this October, I never thought I’d make it this long.  I do wonder…  Is there some person who approved my lifetime service connected disability getting chewed out in someone’s office because I wasn’t expected to live this long?  Or is this person celebrating his/her retirement somewhere?  I hope they are celebrating, whoever they are.

 

I really should have worn make-up here.

That’s teleangectasia on my face.

Without the help of the Veteran’s Administration, and service connected disability benefits, I would not be alive today.  I would have had to endure ineffective treatment and it’s side effects, without the option to find a better doctor and pay out of pocket sometimes for a valuable second opinion.  I would probably be missing fingers because I would have had to have someone split a 100mg Viagra tablet into fours because Viagra was non-formulary at the time for Raynaud’s Phenomenon, (Yes, I was prescribed 25mg and the VA did try to get me to split up a 100mg.),  but I had doctors and practitioners who went to bat for me.  I do realize just how lucky I am to be here.  I wonder, why can’t everyone have disability benefits that are well above the poverty level, like me?   And don’t tell me it’s because I’m a veteran.  I think that is bullshit.  This is medical care and resources.  If a person is too sick to work, how can we expect that person to live a full life if they are constantly unable to buy medicine or healthy food?  And just because a person is sick and poor, that does not mean they do not deserve to live a full life.  Look, I don’t think we should send everyone on a European vacation, I’m saying wouldn’t it be nice if they could put their energy toward health instead of choosing between medicine and food?  I’m so tired of reading about sick people putting themselves in debt while being denied Social Security benefits and reapplying.  It’s just stupid.  And really it does send a message that if they just deny people enough, they’ll  die eventually.

 

Eliminating discrimination based on existing conditions is a start.

 

We are making progress, but it’s not enough.  I’m still here because I have had resources not available to most scleroderma patients.  Medication, though accessible, is still very expensive.  I wouldn’t know that because my medication through the VA is FREE.  Yes, FREE.  Imagine how many people might be feeling better if they had access to care and medicine.  Getting the right treatment based on expense rather that what works, is still the way insurance companies do business- and the VA if you don’t fight for it- but that’s a whole other post.

 

I really have no idea what to do about all that.  Is it just me, or did that go on a bit?   It’s your world.  I’m just living it it.

 

Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as pulmonary fibrosis.  


Lesson Learned.

After spending 45 days in the hospital to save my foot, I am now faced with the challenge of returning to exercise on a routine basis.  As much as I would like to go back to Krav Maga class, this will not be happening anytime in the near future.  I blame the horrid infection of my foot on just thinking about training for a 5k.  All kidding aside, the infection was bound to occur, but it may have been prevented from such a drastic course with proper shoes.  I thought because I was feeling so great, I could take a chance and wear something more stylish.  That was my mistake.   Now, I have this wonderful reminder to not push that good feeling.  Message received, Universe.  Message received.  (You can’t see this, but I just looked at the sky, raised my hand, and impotently shook my fist in rage.)

 

 

Back to one, deep breath

One of my biggest lessons, of many from this past hospital stay is there is no such thing as a last chance for me.  I changed my way of thinking of my hospital stays.  I have always understood that they will be part of my life, but when I would leave, I would think, “This stay will be the last time.”

 

This time, I had enough time to realize that there were so many things I could not anticipate, that I cannot think of any time in the hospital as my last time, and my recovery my last chance.  Yes, after 20 years I understand that I will get knocked down, but I’ll get up again.

 

Hope helps, but knowing I’m going to recover helps more, because it’s not a matter of “if” it’s “when” I feel better.

Of course I cannot predict the future, but I can have a positive outlook.  Not unrealistic, just more than hopeful.   never hope I’m going to get well.  I know I am going to get well.  And even though we never really “know” everything, it doesn’t hurt to act as if I will have a full recovery.  People would say to me  “I hope this gets better for you.”  My reply was usually, “I know it will get better.”

 

Positive thinking helps, but I must do the work it requires to get better.  There is nothing wrong with being stubborn, and I am living proof.

 

So, about the exercise…

I’m working with a trainer to build my strength from the inside out.  Along with strengthening the large muscles, I must work on the small ones as well, especially my core and upper body. Right now, I am using light weights and rubber bands.  These exercises may look small, but I can feel he work I’m doing.  The exercises I do are no impact where my feet are concerned, and since I have lots of work to do on my core, there is plenty to keep me busy until I can do a full plank again.

 

It’s not easy, it probably won’t be the last time I need to restart, but starting again is so worth it.

Go Up The Chain of Command; or In Plain English: Talk to That Person’s Supervisor.

This is also a response to a tweet I disagreed with during a chat with Treatment Diaries almost a year ago.  A fellow patient tweeted, “The Rheumatologist is the captain of your medical team.”  I disagreed.  I could not properly state why at the time.  Now, here is my response: Only if the rheumatologist is qualified, should they be captain of anyone’s medical team.  Not every rheumatologist is qualified.  If a rheumatologist is new to whatever condition you have, and makes the effort to become familiar, they are most definitely worthy of the title: Captain of my medical team.  But really, all treatment is ultimately the patient’s decision, and for me, my rheumatologist is the member of my team.  The most important member of my team, second to me.  

 

Not every doctor is alike.

I have had the honor to meet and work with doctors who will get up at 4am to see a full day of patients, travel to teach, conduct research and still manage to be the nicest people on earth.  When  a doctor tells me that my requests are “hard for them”, or “we don’t do things that way, because it’s always been this way.” makes me recoil;  at first in anger, then disappointment, disgust and then, I respond by seeking another doctor.

 

Veteran’s do have a choice with their care.  It’s just a matter of finding the person who knows how to get it done.  

After my discharge from the hospital, I realized I had missed some big red flags that should have motivated me to get the right Veteran’s Hospital rheumatologist for me.

 

Not only am I acutely aware of the threat of major complications because of the damage done to my body after years of scleroderma,  the event opened my eyes what was once to me, unthinkable possibilities: I had no emergency plan in place if I were to be unexpectedly hospitalized.  One of those things in place requires a medical team I can trust.  One of my team members turned out not to be a team player.  So, I decided to ask for what I needed before another unexpected emergency happened.

 

When I decided I  needed to be seen by a different rheumatology department, I was told, “It couldn’t be done”,  that felt to me like a reflexive response by my provider and patient social worker, but I knew I could get to yes.

 

During my stay as an inpatient at The Veteran’s Hospital, I was told  more than once a day that my providers were here to serve me.  Nurses, doctors, administrators, crazy visitors- everyone was here to serve me, a veteran.  And I saw them tell this to every other veteran as well.  If I was unhappy, I had the right to question and request other care.  In fact, while I was an inpatient, I asked for the Nurse Practitioner managing my case to be replaced, because she was not a good match for me.  It was done with some resistance, but because I was persistent and did not take “no” for an answer, it happened.  Not because I yelled or screamed, but because if I was told no, I went to the next person in charge.  It’s actually rather simple and taught to every person in boot camp, “Have a problem?  Use your chain of command.”  And that’s exactly what I did.

 

If I told my nurse something and it was not done, I told the nurse supervisor.  If The nurse supervisor told me no, I talked to their supervisor.  If that didn’t work I talked to my social worker and finally, I learned if I wanted to get things done, I just needed to call my friendly neighborhood patient advocate.

 

You know that friend you have that  “knows a guy”.  The patient advocates at the Veteran’s Hospital are the guys that people say they know, to get things done.

 

I requested  to be seen by a different rheumatology department in another VA Hospital and keep other frequent routine services done at my local VA without having to switch everything.  Tuesday, I received a phone call the new Rheumatology Department has been sent a consult.  I will be seen there within the next few weeks.

 

How did I do it?  It’s no secret, it’s just persistence.   Asking is not enough; follow up and persistence must be done.

 

 

The break up call. 

Before I received word about the paperwork completion, I was called by a rheumatology fellow, who tolde me he had called on behalf of the chief of rheumatology at Long Beach VA,  to convince me to stay with their rheumatology department.  That the the chief  had my best interest at heart, but the medications I need to have with the correct dosage are “hard to get in the VA system”. The prior statement in quotes only confirmed my decision to request a different VA for rheumatology.

 

Telling me that using an alternate drug because the one I’m currently taking would be hard to get approved was only one mistake. 

I was already taking medication from another VA that was non-formulary.  You know what the prescribing doctor had to do for that?  Fill out extra paper work to make a case for the best medication that works for me.  By my doctor making that extra effort, I was saved time, possible damage and complications by trying a less effective drug, then having it fail.  If I work with a doctor, there is no reason that doctor should not go to bat for me.  I don’t always need non-formulary drugs, but when I do, my doctor gets it for me because they have my best interest at heart.  A doctor who sees me for less than 20 minutes, then recommends I use a less effective drug to replace something that has been effective for 7 years is not a doctor with “my best interests at heart.”  That tells me that doctor does not want to do the initial paperwork.  That also tells me that if my life were in jeopardy and I needed non-formulary medication, that doctor would first prescribe the formulary.  One other thing:  This doctor tried to replace the treatment I had been on for 7 years by telling me, “Your (other) doctor said it would be okay to switch you to the formulary.”

 

When I first heard that nugget, it was by telephone from one of the fellows of the attending physician of that department, and it did not sound right to me.  It sounded like a cherry picked statement from the entire e-mail this doctor claims to have received from my other rheumatologist at UCLA.  It was just too vague a statement.  I followed my gut and I flat out refused the change in our telephone conversation, and I could have sworn I heard a gasp on the other end.

 

Refusing the change was not about my lack of cooperation.  Changing to a new treatment is a big deal. Especially if the treatment I’m on is currently working.  It is rare to have a medication work well enough to stabilize my condition, and to put it even more plainly: If it ain’t broke, don’t fix it.

 

I also had to consider; what if I had adverse side effects from this “new to me” drug?  Do we go back to the treatment that works?  What kind of damage could that cause?  Changing treatment seemed like an unnecessary step.  And instead of one infusion every eight weeks, it was to be a series of injections- into my arm and not my port.

 

My doctors aren’t the only ones making an effort here.  

I work very hard to stay healthy.  Not just by taking my medications.  I have made my life revolve around keeping myself healthy and alive.  It comes before everything.  I have sacrificed living with my son, so that if I need immediate medical care, there is no change in his schedule.   In the past, I have delayed care of something that needed attention because I wanted to be with my son.  Of course I know that my son needs me in that immediate moment, but I also know that if I’m dead or disabled further, in the long run that is not best for my son.  My son has a step sister, a step mom who loves him as her own and a dad who puts his son first.  It sucks to not see him every day, but this is part of what needs to be done to keep me here for my son.  Not only do I sacrifice time with my son, I eat to benefit my health and rarely stray from my healthy food habits, I exercise not only to look and feel good, but because my lungs need the workout to make it easier on my heart.  In short, I do the work, I walk the talk.  I don’t expect my doctor’s to be at my disposal, but when it comes to a choice of medication, I want a doctor who will choose what’s best for me, not what is easier.  I do not ask for the best medication for my condition, then go out and drink, smoke and eat poorly.  I contribute to my care by taking care of my body and putting my health before everything. Everything.  If I am assigned a doctor and I request to maintain continuity of my care and that doctor tells me “it’s hard” to request something before even trying, I will not work with that doctor long.  If that doctor is a fellow, it’s easy to request to be seen by another.  But when it’s a chief of a department or attending physician, that person is leading that department by example.  That is when it is time to take drastic measures.  Even if it means adding drive time to my appointments, and waiting a couple extra weeks to be seen when not in crisis.

 

This has happened before.

I was not satisfied that the shortness of breath I was experiencing was not normal, or just the disease process of scleroderma.  I felt like I needed a real answer, so I followed my gut.   I took my CT films and reports from my local Veteran’s Hospital and a local private hospital and went to an emergency room 3 hours away for a second opinion.  (I used the ER because I was short of breath and the doctor could not see me that day.)

 

My local VA hospital and private hospital ignored the following statement in my radiology reports:  “Follow up immediately, possibly lymphoma.”  Yep.  The possibility of lymphoma was just interpreted  as “normal disease process” and wrote of my swollen lymph nodes in my chest as simple inflammation.  That visit to another ER with more resources got me a pet scan, then a biopsy to determine what was going on.  It wasn’t that the doctors I saw locally  didn’t want to help, they just did not know how.  It was out of their scope of knowledge.  That act of taking my films and reports to an ER with more resources was what got me the right treatment that has been working for 7 years.  Yes, I paid out of pocket and used private insurance provided by the company my ex-husband and I owned at the time.  But it was worth it.  Thanks to taking action, I eventually had a stable condition.  It took a lot of work on my part.  Of course I wish it didn’t take this much work on my end, but I also have two rare illnesses and I have yet to meet another person with both scleroderma and sarcoidosis.  So if work is what it takes keep me healthy and mobile, I’ll gladly do it.

The Growing Pains of Self Advocacy

In August, I moved from Murrieta to Long Beach to be closer to a Veteran’s Hospital.  I was being seen at Loma Linda Veteran’s Hospital, in San Bernardino for over 10 years.  I moved to Long Beach because I prefer the beach to the mountains.

 

Yesterday, I had a follow up appointment with my rheumatologist in Long Beach.  We did not agree on  resuming treatment for scleroderma and sarcoidosis.  I could go on into details, but I won’t, because it will be only my version of what happened.  It will be riddled with my emotions and one-sided.   Because I was so one-sided about one topic- resuming my treatment, I forgot to mention other issues that needed to be addressed.  The rheumatologist will not see me for three more weeks.  When her office called today, I asked to see her next week because our appointment was unfinished.  He  made it clear I would not be seen for three weeks, but did say I could stop in next week and talk to one of the Fellows.  So, that was very reasonable.  None of my problems are life threatening and can definintly wait one more week.

 

Yesterday, I lost my cool.  I did not yell or cause a scene, I just could not focus based on this disagreement. My appointment ended before I could address all of the topics that needed to be addressed.  I did this in the 1990’s more than a few times and symptoms would get overlooked simply because I was too upset to stay focused.

 

My point?  

Being my own best advocate has helped me throughout the years, but because I am advocating for myself, when I get upset, I need to take my emotions, set them aside from whatever has made me upset, and move on to the next topic, otherwise it will get overlooked.

 

This is not the first time this happened, but it has not happened in about 9 years.  It’s growing pains into a new health care system.  This is a working environment.  Although my day to day business at the Veteran’s Hospital is for my personal well being, it is still a working environment.  Things will get personal, but I cannot take them personally, because it fogs up my view in the moment.  Taking care of our health is a full time job for everyone  For those with chronic illnesses, we live where we work.  We don’t go home at the end of the day, our job is 24/7.  When dealing with doctors or any health are setting, – for me, it helps when I think of providers as my peers on the same team.  Of course I do not have the same education and experience a doctor would have, but we work together on the same team. And my providers belong to countless teams lead by every patient or caregiver of a patient’s team.

 

We are all unique.  

Patients with all diseases are unique because every human being is unique.  How our disease affects us is unique.  And how we advocate for ourselves and cope with the treatment, or lack there of, is unique.  I cannot speak for anyone else, but me: a patient diagnosed with scleroderma 20 years ago and sarcoidosis 8 years ago.  I can say after all this time it can be very difficult not to show my feelings of Hulk Smash! going on inside, but  it has gotten easier not to.   Luckily with age and experience comes wisdom and patience.  The wisdom helps, still getting better with the patience and somedays, I have neither.  Yesterday, was difficult, but I see two more doctors today to help address some of the topics missed yesterday.

 

Every doctor is unique, especially when it comes to scleroderma. (Not just “Scleroderma” more like “Insert Disease here”.)  

The doctors I worked with in San Bernadino were very open to working with a doctor at another location because they referred me to that doctor.  Here, I came in and (I’m paraphrasing) told this rheumatologist my treatment is managed by another rheumatologist and I come to the VA because that is where my care is available at no cost to me.  Because of the treatment relationship with a doctor who has vast experience with scleroderma, I have been able to challenge formularies of the Loma Linda VA because the Rheumatologist there referred me to him.  This is different.  I am stepping into another rheumatologist’s “house”.  I’m asking this physician to just “do what the other doctor recommends”.

 

We had no prior relationship relationship other the me coming in, refusing her recommendations and continuing my treatment that she has to approve in order for them to go forward.  Doctors have feelings.  Should I care?  Yes, because in my mother’s generation, they took a doctor’s word as Gospel.  Some people still do.  I question everything.  Not out of disrespect, but because I want to know.  It’s not like a discussion in a college history class, I’m emotionally attached to the outcome.  At times, emotions get in the way.

 

Yesterday, I was reminded that I may know a thing to two, but I don’t know it all.  I’m not saying the doctor I saw yesterday is right and  I take comfort she is not my only option.   Self advocacy is all about finding options.  If I continue to hit roadblocks, instead of becoming upset, I can look at my options and work to be seen elsewhere.  I can move forward, be patient and work in my own best interest.  The hard part is when I feel all “Hulk Smash!” inside, no matter how much experience I have, there will be some times I have trouble not acting as such.

Update, 5/13/2014.

The chief of rheumatology at the Long Beach VA, has turned to be an unfavorable match for me.  So I am moving my care to the West LA Veteran’s hospital, where the chief of rheumatology is willing to work with my doctor at UCLA.  The Rheumatology Chief tried to give me incorrect information about effective medications for my condition.  She actually recommended something that has been shown to be less effective than my medication that I had been taking for nearly 7 years, for reasons I cannot even imagine.  The bottom line is, if I cannot trust my doctor to give me correct information based on what works, instead of a formulary when non-critical, I cannot trust her during a critical event.  So, I’m taking my “ball” and going to “play” somewhere else.

 

 

 

Part 2: How Fox News Calls This Veteran A Member of Entitlement Nation

Part 2.  I have recently been released from the hospital.  When I got out, I saw elected officials suggest we defund ACA to fund food programs for the poor.  The ACA is law.  It’s not perfect, but neither has anything else been perfect, at any time in history.  Yes, I am a disabled veteran, and with that comes privilege to free healthcare.    I am infuriated by the hardships  I  see friends and family members  go through to get life improving, even lifesaving care.    I am lucky to be a disabled veteran, because I would be dead without the great, sometimes imperfect, care.  Medicine is a practice, especially in my case, but not just in my case.  I just have been lucky enough to have the resources to fight. 

 

I have  never met the guy, but I’m pretty sure Jesus would not ask the poor to trade food for their medical care.

Our country is changing.  As we become more accepting, we are dragged back a few steps by people who do not want change.  Maybe it’s because they are afraid of change, or they enjoy salaries paid for by special interest groups who are doing all they can to avoid paying taxes.   We are spoon fed cherry picked and inaccurate information.  I propose we own what they call those who are trying to make their lives better by working are, but getting paid unfairly; or those who want to work but cannot find a job; or those who want to work but are to sick to do so; or those who quit to take care of sick family members who need around the clock care or may be dying.  Those who proclaim this as a “Christian” nation missed a memo or have wrongly named themselves- unless the definition is not longer one  following the teachings of Jesus.

 

Smoke and Mirrors

Our culture is brainwashed to think of the poor and sick as villains.  That we are faking illness or being lazy.  That our goal is to lay on the couch and do nothing because we don’t want to work.  There is no system in all of existence that could never be gamed.  The whole system and anyone who uses it,  is talked about as if the majority of those receiving benefits are just lazy.  Here is something I want to ask: Could it be that many are poor,  because they are sick?

 

The VA is not socialized health care.    

Well, for 100% service connected veterans like me, it is.  Everything is free.  I pay no copay, nada, zip zilch.  And, if I am not satisfied with my care, I can change providers.  People who work in the Veteran’s Hospitals help veterans get the best possible care.  They are good, well meaning people who even tell veterans to their face that they are there to serve them.

 

My healthcare is great, but in other matters, that’s another story.

While I was in the hospital for 45 days receiving that delicious socialist healthcare by an amazing group of doctors, nurses, caregivers and a nurse practitioner who could not be stopped, my car was ticketed, impounded then repossessed by my car’s finance company, because I was unable to get it out of impound and impound fees would eventually be as high as the current value of my car.  Not because I couldn’t afford the payment, but because I couldn’t afford the impound fees.  It was an unfortunate outcome, but I calmed down once I remembered I could always get another car, but I will never get another foot. As with many fighting health battles, a small slip up like forgetting to move one’s car can be devastating, but the priority of health must come first.  I’m lucky because I just lost my car.  I don’t have any hospital bills or copays.  I am very lucky.  Getting healthcare should not be given to only  those who can only afford it or have Veteran’s Benefits.

 

I am Entitlement Nation

I collect Social Security in addition to my Veteran’s Benefits.  I am part of what Fox news calls, The Entitlement Nation.  You don’t even need to hear the sound to know what this graphic means:

 

 

See that outstretched hand ripping through the heart of the United States of America?  That is how Fox News depicts me, an American Veteran, who in addition to her veteran’s benefits collects Social Security, and those who share my same health conditions who are not veterans.  Look very closely into the pixels of that hand.  There I am right next to someone you have never met who doesn’t have Veteran’s Benefits, lives on entitlement programs and is very, very sick.  Of course they did not pay in blood sweet and tears, as veterans and their families do.  I am in no way saying that Veteran’s do not deserve the best health and assistance.  I am saying that those they come home to need help,  are being vilified and I find that sickening.

 

One, two, three, what are we fighting for?

I joined the Navy in 1990 because I was a 19 year old manicurist who wanted travel while saving up for college.  I served during a combat era and saw no combat.  In 1994, I was introduced to the real cost of war because I saw and met many vets who did see and do horrible things just to get home alive.  So yes,  I am speaking about majority of people who are poor and sick and cannot or could not get healthcare throughout the past 20 years I have seen, who did not serve in the military.  Civilians.  But aren’t they who the military serves?  There is not one service member who does not know of someone who has died prematurely of cancer, or some disease.  Don’t those who stay home deserve care not just because of their vocation, but because they are fellow human beings?  What freedoms are we sending our service members abroad to fight for, if not to protect those they love at home?

 

He who has the gold, gets the care.

The ACA is a start.  Medication is still outrageously expensive in some cases.  Access to preventive care and treatment for acute diseases should not be denied on the basis of payment.  I feel like the more elected officials try to change this, the more vilified the poor gets.  We blame the takers.  Takers like me.   Yep, I make a lot of money off the government teet.  I would like to thank all taxpayers for allowing me to have the ability to get the care and medication I need to be alive. I am represented by that outstretched hand.  Me and millions of others who receive Social Security at a young age, food assistance welfare and unemployment benefits.  Did you know that all service members are allowed to collect unemployment benefits from their home state?  I did when I got out.  And so did every other person I know when they got out.  But that was a long time ago…

 

Fox News is very popular at the VA Hospital, and not for visiting veterans.

Over the years I have sat in VA Hospital waiting rooms where Fox News was on TV.  I have watched Fox News devolve into a delivery service of lies and misleading statements that would make a public outhouse at the end of a county fair look attractive.   That outstretched hand may not represent those Veterans watching, or maybe some of this veterans watching are on welfare and SNAP while waiting for their benefits to be processed.  Yes, there are veterans out there collecting welfare and SNAP benefits to feed their families while they deal with going through the VA system for mental health treatment or maybe care for a missing limb.  That graphic may represent those they come home to, or those who care for them.  Our ability to have empathy for our fellow humans is being smothered.

 

Caregivers must eat too.  

Let’s talk about caregivers.  I know someone who lost her job and took on the duties of caring for her father, a veteran,  in his final years with late stage dementia.  After he passed, she continues to care for her mother full time.  She collects no wages.  Every day, she and her immediate family manage the daily care for the 85 year old widow of a veteran.  Her mother needs care 24/7.  If my friend has time to sit down and eat bon-bons and  watch a little TV, I’m thankful she enjoys a break.  In addition to her family, and three more like them I can think up off the top of my head, there are families all over the United States in that similar situation.  People who had to quit their jobs to take care of a sick parent, child, brother or sister, and may not even qualify for benefits and even fight for benefits after their loved one has died.  They fight on behalf of the sick family member for benefits that are barely above poverty level, and mediocre medical care,  in addition to taking care of the family member while collecting no wages.  They may eventually need to use assistance for food and shelter.  There is no shortage of unique situations that have one thing in common:  They result in poverty of the sick individual and caregiver, resulting in a life of hardship in addition to the ever-present cloud of death that hangs in the air over the home of every chronically ill person.    I actually watched a man with a british accent on one channel talk about how someone without a high school diploma, does not deserve higher wages for their hard work.  Who is that blowhole?  And what gives him the right to determine what wages someone should make based on their education?  You can have a Phd and still be horrible at your job.

 

Why do I write about this?

As a country, we can do better.  I’m tired of reading statuses of benefits being denied to very sick people, people in need.  People who could benefit greatly from medication now, and not when some paper pusher gets around to making it possible.  I collect social security in addition to my benefits, which is what many elderly veterans do, and I am no where near elderly. I paid into it as long as I could.  I want to work, but with my health, it is not an option for the full time job I need to be able to provide for me and my son.  I used to feel guilty about receiving Social Security benefits.  Seeing this graphic below doesn’t make me feel bad about “motor boating” the governments ample breasts, as Jon Stuart so eloquently stated.  I am empowered by it to tell you what I have, and make an argument for better care of the sick and poor in the United States.

 

With all of this vilification of the poor, when will they propose we just leave them to die.  

Do you want to live in a country that vilifies it’s sick and poor?  I don’t, but guess what? We do.  That graphic describes me because I am a taker.  I create no jobs.  I collect social security.  Yes, I am a veteran, but I am not going to pass up on benefits that will make my life less about my illness, not this  mom.  Do I not deserve to give my son the best possible life,  or should I not, because I am sick and I need to stay home and wait to die?  That is how I feel when I see graphics and ideas supporting vilifying the poor.   Should my almost 10 year old son be forced to take care of me when he comes home from school every day?  Or should he instead enjoy learning leadership skills and physical exercise at marital arts class that my income allows me to provide?  If I did not have my veteran’s benefits, he and I both would have died in child birth because there would have been no magic letter.   When I was able to work, I had benefits and assistance to take over my family’s small business because of my disabled veteran status.  No.  Had I not joined the Navy, I would have had to quit my job as a manicurist and live on social security and live with a family member.  Had I not joined the Navy, I may not have scleroderma or sarcoidosis- but that’s also a another post.  Those possibilities are not my realm and I am fortunate.

 

I am not sitting on my ass all day eating bon-bons.  I am healing or working to stay healthy so that when I see my son, I am 110% present. Like all children, he deserves that.  I read about single parents scraping by, sick as hell taking care of their kids with Social Security as their only source of income.  After medication copays and doctor’s visits, they can afford processed food, because it’s cheaper, but causes more complications to their illness.  If you think that eating macaroni and cheese, or an easy drive through meal  instead of a meal with a form of protein and fresh vegetables doesn’t make a difference in health, then you are living in the 1970’s era of meat and potatoes, cigarettes and disco.

 

Turn off the TV and see what happens.  

We take a lot for granted in this fast food culture.  Simple things like how non- processed meals can make the difference in a person’s ability to function.  Worn out shoes cause a blister than can send a person into the hospital for months.  It comes down to the basics. Talking heads and even elected officials go on and on about our country’s lack of family values and build a crisis based on who should marry whom.  Buzz words are tossed about to scare the ignorant, distracting this country from doing what it needs to do for it’s citizens.  They are convincing people to vote against their own interests.  If we don’t stop this madness and start taking care of our sick, we are in no way worthy to ask for the blood, sweat and tears so many in our past and present military have, and continue to shed for this country.  Change the channel.  Turn off the TV and go outside.  That is real.  Fox News is not.

 

Who am I?

I’m just a patient with a blog.  I write to share my experiences. I do want to make the world a better place. My life is no way perfect, but I get a lot of help because I am a veteran.  That’s awesome.  No, how about we take care of those people veterans know and love.  Yes, being a veteran is special.  But watching others with the similar illnesses and situations choose between food or medicine is wrong.  Oh, and don’t get me started on mental health care.

 

I don’t know where to even begin to address this issue so I’m going to just say this:  I am disabled and I collect Social Security and do not work.  So, according to Fox New, that makes me a taker.  #IamEntitlementNation  How about you?  Do you feel shame when someone asks you what you do?  Or do you wish you were able to finally get that teaching job back you were laid off from?  There are many unique situations, but must people be shamed because they are in need?  No.  I receive money every month because I’m a disabled veteran, in addition to my Social Security Benefits.  My quality of life is very good, my access to medicine is total.  I have survived 20 years and counting since my initial diagnosis.  My son will have his mom much longer, because I know I am taken care of and he will grow up not remembering watching his mom die a horrible slow torturous of scleroderma.  He will remember how full of life I was, and how every day was an adventure and he will have a solid foundation of love to look back upon.  So hey, why not make up a silly hashtag in response to that silly graphic, and see what happens?  Tweet, Instagram, or Facebook a short sentence with #IamEntitlementNation   Don’t do it because I suggest it.  Do it if you ware tired of seeing the poor and sick vilified, denied medical care and needing get the basics in life.    It will give us all something to do while we wait in the doctor’s office, or taking a break from sending out resumes.   It’s just a suggestion.  I’m recouping from nearly loosing my foot.  I’ve got nothing but time.  Except Thursday.

It’s Not So Bad, If You Enjoy Walking into a Cactus.

 

This part’s a little gross.  If you’re eating, you may want to skip to the next section…

Over the weekend, I had a sore on my foot.  It turned out to be a blister.  My original fear was it was one of those lovely calcinosis sores and luckily, it wasn’t.  It did become infected, but it was an external infection, so  I was able to soak the infection puss out.  Then I removed the dead tissue with sterile small scissors found in suture removal kits, called debreeding. Debreeding must only be done by a trained healthcare professional.  (Remember, I am a Wound Care Jedi.  I was shown how to do this in 1996 and I  have nearly 20 years of experience. DO NOT TRY THIS AT HOME)  If you visit your doctor, you can ask for a referral to a wound care clinic (or something like it).

 

Beneath the floppy dead tissue of the blister, was beautiful  healthy skin, instead of empty space and more fluid I have found  in hundreds of sores on my hands.  This tells me my feet are getting the nutrition they need from blood.  Now that a hospital stay is not in my future, I can focus on preventing further infections.  It started as just a blister, but it became infected because I have been wearing flip flops around the house and outside.  The bacteria that infected my blister may have come from needing new flip flops, or dirt and crud on city streets.  (ewww)  Most peoaple can wear flip flops, but I am on immunosuppresant drugs and sometimes washing my feet is not enough.

 

Time to Heal 

It would be ideal if I could sit here with my feet up and not move, but that is unrealistic.  Not only because I have responsibilities, but getting up and moving around helps my attitude, even when painful.  My experience has been that healing is more painful that the infection, but if I let pain keep me down all the time, I wouldn’t have moved for the last twenty years.

 

When something is painful, I classify pain as a type, and base my execution of activity on precautions and adaptation needed.    I don’t have a set classification scale, because it has changed over the years because every now and then I get a type of pain I have never experienced that requires my getting use to it before classifying it, but here’s an exapmle of the types of pain classification I use:

 

1.  None.  Haven’t experienced this one more than a minute or two at a time.  I equate “none” to unstable synthetic elements that have half lives that range from a few milliseconds up to a year.  Short lived, but does exists.

 

2.  Background Pain.  Present, but hums in the background with little interference in daily activities that are not limited to occasional a three second “pain face”.  Yes, it hurts but I can tune it out.

 

3.  Manageable.  Pain that requires pain medication to function.  Funtion-ability returns once the meds kick in and returns pain to status of background pain.  Rarely does pain at this level return to “None”, because the medication is strong enough to take the edge off, not dope me up.

 

4.  Ouch.  Needs pain medication and rest.  Pain medication levels required to knock the pain down to none and rest is required until activity can resume at a back ground pain level.  This usually takes a day and a half.

 

4.5  Holy Ouch.  Infection or injury needs to be checked by a doctor and treated with antibiotics.  Possible request for stronger pain meds.  I made it half a point higher because there is a fine line between ouch and Holy Ouch.

 

5. Level 5.

 

Pain is so high at this level, it requires a name in bold font, a picture and no less than a morphine drip.  Whatever is going on requires a trip the the doctor or  emergency room, that usually results in hospitalization.  With a Level 5, I would be in less pain had I run naked into a cactus.

 

Level 5 has become rare for me because of my ability to prevent injury, or early detection of infection.

 

 

Current Condition: Ouch.

The degree of this pain is mostly tolerable, but because of the location, I must rest more than I normally would.  It’s much easier to guard a hand than the bottom of my foot.  So today, I will spend it resting with my foot elevated.  This means when I do walk today,  I will walk a little slow.  Every now and then I will make a face, but other than my foot, I feel great, so it makes this workable.  And since resting all morning, I feel better.  I know that more rest today will result in faster healing because the skin the bottom of my foot will not be disturbed that much.

 

Tomorrow, I have a doctor’s appointment with the rheumatologist who was concerned about my ability to be able to shave.  Her mind is in the right place.  Had I read my chart from a doctor’s perspective and never met me,  I would not have expected someone so active to bounce into my exam room.

 

Helpful Healing Practices. 

Times like these when just one variable can turn tip a situation into a full blown hospital stay, I pay attention to things I can change, like diet.  I stay away from junk food.  My diet will consist of healing foods high in protein.  I will stay away from processed foods and drink lots of water.  I know what foods increase my chance of swelling and slow healing through experience.  Everyone’s body is different.

 

There is no secret to managing a chronic illness and living longer with one.   I am not a doctor, and I can only share with you what has worked for me.  Being a vegetarian is not one of them.  Without animal protein, my skin breaks down.  Soy protein in things like tofu or shakes increases my inflammation.  Sometimes it’s luck.   Most of it is as healthy a diet as possible, exercise and outstanding access to the healthcare I need with no financial barriers provided by The Veteran’s Administration.  I have to fight for things at times and even kick down a few doors, but because the VA system is a socialized one, it is not limited when I advocate for myself.

 

Pep Talk.

To fellow patients: don’t give up.  We have to fight for treatment.  Yes, it sucks but complaining will not solve this.  We need to get the information to the person who is blocking us from getting the treatment they need.  It’s hard not to make it personal.  I have a lot of practice loosing my cool.  It took me years to work from a position of, “This person does not have the information he/she needs.  It’s up to me to get it to them.  And I have to be patient and persistent.”  I spare no use of foul language at times talking to myself about this, and yes I consider that a coping mechanism.

 

 

Chronic illnesses are not always the cause of death.  Sometimes it’s financial resources.  

One reason I shout about healthcare reform and politics, is because I know that I would be dead had I not had the access to healthcare I do.  I know that many other patients with scleroderma have died because their insurance would not approve the best possible treatment, only the least expensive.  And it’s not just scleroderma patients.  I’ve read about Lupus, sarcoidosis, MCTD and too many diseases to name here who have died because of financial barriers.

 

So, if anyone needs me today, I’m relaxing and watching some TV with my feet up.  Have a great day!

 

Want more?  Find me on Facebook

 

How To Request Blood Tests Before a Doctor’s Appointment

It’s easier than you think!


Patients with chronic illnesses, see specialists for routine appointments four times a year.  Many, like me, are on life extending drugs that can cause damage to kidneys, liver and cause infections, so four times a year becomes a normal routine.

 

I used to be upset because the blood test results my doctor would be reading to determine the course of my scleroderma and sarcoidosis, was often 3 or more months old.  In some cases, as old as 1 year.  That’s because I developed a routine where I saw my doctor first, then went to the lab to get my blood work, then 3 months later meet with my doctor and talk about 3 month old blood work, but have new symptoms that were less than a month old.  One day, my local nurse practitioner I saw while using traditional insurance, suggested I call two weeks before my next appointment and order my own blood work.  So, I tried it.

 

First, I tried calling.  The office staff did not understand what I was trying to do.  Because even though I had a order from three months prior, that order had expired and a new one needed to be made.  And they could not understand why a patient would call in and request her own CBC, Chem Panel and Sed Rate.  I was not talking like a patient.  I could sense their frustration over the phone.  Rather than get angry, I went into the office and made the request in person.

 

I had no appointment.  The waiting room was packed.  It was 2005, and the usual wait for a doctor’s appointment was two hours.  My ex-husband and I owned a small business together, which made it possible to have insurance, but that’s a whole other post….

Temecula and Murrieta had grown so fast in the housing boom and medical practitioners were up to their elbows in over bookings.  I stood in line at the reception desk and simply said, ” Hi, my name is Karen.  I have an upcoming appointment with Dr (Name withheld) and he will need current blood work.  May I request an order for blood work  from him?”

 

Yes, they did look a little confused.  The receptionist asked me to take a seat and she would be right with me.  So, I took a seat.  I expected to wait so I brought a book.  This was before tablets.             (Could we call that Post Book Era or PBE, maybe  Pre Tablet?  Whatever.)

 

Te receptionist called me back to the desk.  She asked me to write down my request and she would call me when the order was ready for me to pick up and take to the lab.  (This was also before lab orders could be sent electronically.)  So, I wrote a friendly greeting, told my doctor about my idea and listed the tests.

 

A few days later, I received a call from m doctor’s office and was told my lab orders were ready.  A week and a half later, I met with my doctor for my “routine” appointment.  He was impressed by having such current blood work.  To be honest, I was happy to be talking about what was going on with me right now, and not three months ago.

 

I made it my routine to call his office and the receptionists knew exactly what I needed, because I went in person and explained what I needed.  It took up extra time, but saved me time in the long run.  My phone calls would sound something like this:

“Hi, this is Karen Vasquez.  I need to get an order for my labs.”

 

The reply:  “Sure Karen, what tests do you need?”

 

“I need a CBCChem PanelSed RateANA and I think it’s time for my PFT’s. Can we get an order for that as well?”

 

“Sure, Karen.  Talk to you in a few days when the orders are ready.”

 

Now, I manage my scleroderma and sarcoidosis and receive treatment at my local Veteran’s Hospital.  Labs are in the computer, no calls need to be made.  I also know that many with scleroderma, or many with a chronic illness (or two) do not enjoy the care I get.  I am very lucky to have access and I know it.  I hope that my posts help others become their own best advocates.  It;s possible.  It’s frustrating, but  there are so many different types of chronic illnesses that share many symptoms, we need to know what we need, so that our providers get it right.

 

So, if you skipped to the end:

 

Request your lab orders before your doctor’s appointment is you want to.  Don’t be afraid to ask or speak the “language” your doctors and providers do.  And if you have a boyfriend who tells you to “stop talking like you are a doctor, because you aren’t.  Stop trying to act like one.”  He’s threatened by your intelligence.  His reptilian brain has not evolved to match his human body.  Break up with his dumbass.   Just sayin’….

 

Links in this post:

Mayo Clinic

ANA Test

Pulmonary Functions Test 

CBC


To help cure scleroderma, please visit Bounce to a Cure.


To learn about Scleroderma Research, visit Scleroderma Research Foundation founded by scleroderma patient Sharon Monskey.


To find a scleroderma support group near you, visit The Scleroderma Foundation.

 

Also, check out Scleroderma of Trinidad and Tobago.  


So many orgs, please check out The Mighty Turtle on Facebook for more.