Glimmer...

I began writing a post yesterday morning, and it had a very different tone then the one I am writing now.  I am glad that I ran out of steam before I finished it, and published the blog.  The constant pain from a fractured sacrum, lack of sleep, and what seemed like doctors who were unwilling to treat me came crashing down around me in one wave of Pity Party Central.  Not that the pity party wasn't well deserved, but it also wasn't "me".  Somewhere along the line of pain and lack of sleep, coupled with...ah yes, high dose steroids, I lost what is intrinsic to my personality, and that is HOPE.

Sometimes that hope is just a glimmer I can see off in the distance, but it is always there somewhere.  Thankfully, after yet another discussion with my rheumatologist, that glimmer of hope came back.

So, tonight, despite the ice-pick pain in my hip from my sacral fractrure (due to long term  prednisone use or from the last immune suppressant I was on...and am now off), lack of sleep (insomnia from the high dose steroids I am unable to lower until I start my new glimmer of hope...Benlysta), and the fact that I have NO idea if my insurance will approve this very expensive, new, infusion....I have some hope.

Some people may wonder how, after trying so many medications, and I have tried every pill/liquid on the market for lupus, I can still have hope that something will work.  For me, that answer is  simple....I am not the only one with lupus/autonomic dysfunction, therefore, there has to be a way to treat the underlying illness.  There are always new treatments becoming available, and ones that treat similiar illnesses that might work, if this one  does not.

I am only 33 years old....I am way too young to give up and curl into ball, even if I have to give my body a break every now and then to let it heal (like now with the fracture).  That is not me giving up or even going into survival mode (though I don't think anyone would blame me if I did)...it is making sure my body heals itself in the most effective way possible, and as ordered by my doctors.

As I heal from fractures, my hope slowly being restored, my wish is that this glimmer will turn into something as bright as the sun so my whole family can feel the effects.  This is not just MY illness...but their's as well.  We have all felt the downturn in my mood, so here is yet another HOPE, that we all feel the uptick in my mood, as well!

To Tell or Not to Tell

When I first decided to start dating again, after a very long three year hiatus, I asked my lupus warrior friends when I should introduce the fact I have lupus and autonomic issues.  I had my own opinions on the topic...that it should be within the first few conversations (since I was using an internet dating service), but I wanted to know what other's had to say on the issue. 

Almost everyone that answered me told me to wait until after some kind of relationship was established...and definitely not before or during the first date.  I was shocked by these responses.  Lupus is such a big part of our lives.  Yes, we may not "look sick", but lupus does impact our lives in a myriad of ways: from fatigue, to diet changes, working (or not, in my case), physical issues (pain, immune suppression, medications...), and of course if/when we end up having a "flare". 

I ultimately decided to write my profile hinting of my lupus status by writing about how I am on the Board of Directors of the Lupus Foundation of the Southeast Chapter of Florida and run a support group called "Living with Lupus" once a month.  I also made it quite clear that although I did not mind if my partner had children, I could/would not be having any of my own. 

I did get many responses to my profile, and went on a couple of dates that led no where, despite the fact that I told both men about my lupus status up front, but when push came to shove, they could not deal with the health limitations that came with my "normal" for now. 

I was lucky enough to find someone who accepts me for me...lupus and all.  He thinks "normal" is boring and finds my quirks endearing, not scary.  If I hid my medical status until after our first date, I do not believe there would have been a second date...no more phone calls...no friendship to build upon because I would have been lying to him about a very important part of my life. 

Lupus is not my whole life, but it is unrealistic to ignore it in the dating world.  So my advice, for what it is worth, is to be honest and upfront.  If the man/woman cannot handle your illness in the abstract, isn't it better to know early?  For me, explaining a little bit more about myself then I would have normally, made all the difference.  No more hiding or living in survival mode. 

There is no shame in having lupus. 

Watching From the Outside

As everyone knows by now, I have Systemic Lupus and Autonomic Dysfunction.  This has been my life for over ten years.  It has been like living on a seesaw that never ends, and my parents have had to watch, from the outside, every painstaking moment of pain, confusion, frustration, depression,  anger and finally acceptance of my illness. 

I am now on the other side of this, along with dealing with my own illness.  I am watching my mother struggle with, not only Systemic Lupus and Sjogren's Disease, but also NMO (or more commonly known as Devic's Disease).  This disease falls under the umbrella of both transverse myelitis and, until recently, was misdiagnosed as Multiple Sclerosis because of the lesions that form on the brain and spinal chord.  Like my Mom, many people with NMO also have other autoimmune diseases. 

My Mom was "lucky", in that she was treated early, and did not suffer the paralysis or eye involvement that impacts so many with this devastating disease.  She does, however suffer from pain sensations and numbness...she must take medications that she NEVER took for her lupus or Sjogren's. 

Watching from the outside is much more difficult then I ever thought possible.  I had hoped that I would be of more help...that I COULD be of more help, having been through my own illness.  I would never wish these illnesses on anyone, but this process of grieving the life once had is one she must go through.  As much as I understand that, I want to make it better for her.  I want to show her that through it all, that despite medications and possible relapses, we have survived and are moving ahead, even if is slowly. 

The link I posted below is for a fundraising effort for NMO, which is a rare autoimmune disease that attacks the spinal chord, optic nerve, and sometimes, brain.  It causes lesions that inflame leading to paralysis, pain, difficulty with organ function at all different levels (depending on where the lesion sits on the spinal column), and fatigue.  The medications to treat NMO when in a flare are HIGH dose prednisone and different immune-suppressants or plasmapharesis. 

Please take a moment to look at this wonderful site below to help out a worthy cause!  Rare diseases get so little attention...Let's bring awareness and education to NMO!  We need better treatments and a most definitely a cure!


Cure NMO Bracelets and Key Chains

or you can donate to the Guthy-Jackson Foundation

I Went For It...Moving Forward

After my last hospitalization, when I dropped down to 15 mg of prednisone and found that the two neoral were not working, I was raised up to, once again, 60 mg of prednisone to be brought down slowly as the neoral was raised to three pills a day.  I am currently on 35 mg of prednisone, waiting for a few more weeks until my blood concentration of neoral can be tested to make sure that I have enough in my system before lowering below 20 mg of prednisone.  I will not go through that kind of flare again for lack of knowledge. 

Since I have been "stable" on the higher doses of prednisone, and feeling pretty well on the three neoral a day, I decided it was time to move forward with my life.  I have been making phone calls and writing more emails to service dog facilities and trainers.  I cleaned out all my old files and shredded what seemed like an endless amount of paperwork that was cluttering our filing cabinets, since we hope to move one day...hopefully sooner then later.

And then I did what I said I didn't want to do...I signed up for match.com.  I finally realized that if I wanted to really move forward with my life, that I had to get up off my bum and take that final step.  I had my Dad take me driving yesterday, since it had been over two years since I have driven.  It  has also been over two years since I have dated.  It is time.  It is time to put myself out there.  No guy on a white horse is going to rush up to my door to come and rescue me from my life.  I have to put myself out there.  I have to do this for me. 

I am 33 years old and way too young to be cooped up in the house pining away for a date when I feel good on the weekends.  I am too young to wonder "what if"?  Now, when I feel well enough to do this, is the time.  It is my time to move forward. 

If things fall backwards...well, that's why this blog is called the seesaw, but at least I will have tried!  I am tired of regrets!  NO MORE!  I am forging ahead as steadily as I can.  Wish me luck...I think  I may need it on this one! 

Now What?

When I started this blog, it was supposed to be about different topics that I felt were relevent to the lupus community. Unfortunately, after I dropped a dose of medication, my lupus (or something), decided to flare up.  Truthfully, this blog IS relevant to the lupus community...it happens to us all.  The feelings we go through, the flare ups we get out of no where, and the fear of the unknown are so common to lupus warriors everywhere.    

I expected the few days of feeling miserable, and the resulting autonomic issues (fainting, tummy issues, extreme fatigue, muscle spasms...).  What I did not expect was a strange pin-point rash on my lower back that is now spreading to my belly, burning/tingling in my scalp, and my throat to spasm along with more muscle spasms about a week later.  I am not sure what is going on...I do not know if this is a result of all the physical stress my body has been under since I got my concussion about a month ago, and now that I am back down to my "normal" dose of prednisone my body is flaring.

I have a call into my rheumatologist to see if the bloodwork I did last week came back and shows SOMETHING.  Maybe he will have some idea of what is happening.  I really hope one of the medications I am on is not causing this reaction.  I cannot afford to drop any more medications.  The stress on my body would be way too much.  I truly do not want to up my prednisone again, only to have to lower....again. 

The unknown is the worst...I can handle what I know.  When I have a plan of action, I can usually deal with it pretty well, but not knowing what is going on in my body is extremely frustrating! 

One can only hope it isn't anything serious, and I will not have to do anything drastic.  That is my only hope...

PULLING YOURSELF UP FROM THE DEPRESSION

 

HOW TO GET THROUGH THE DEPRESSION

 

 

Depression can either be a symptom or as a reaction to the illness itself.  Either way, it is no picnic going through the rough times.  They can seem like there are holes that are so dark there is no way you can possibly climb out.  Somehow, though, you always find your way back to towards the light of day. 

That is because most of the depression is medication or flare induced…and both GO AWAY…sometime in their own sweet time, but they do go away.

The key is getting through those times with the least amount of damage to your self-esteem, other people (yes, sometimes we say things we do not mean when in those “depression” moments), and generally managing it the most effectively for your own peace of mind. 

Trying to push it aside and pretending the depression does not exist does not work, so here are some strategies to stop the volcano from bubbling over into the rest of your life.  There is no need for it to take over your life, so let us try to figure out what works for YOU.  There are plenty of NON-DRUG therapies out there to help ease the frustration and depression of Lupus and its drugs. 

·         Traditional therapy – Sometimes lupus patients need to speak with a psychologist who has knowledge in medical illness.  A psychologist does NOT prescribe medications.  They are just there to listen and offer up suggestions that may work for you and your specific situation.  It might take seeing more than one psychologist to find the right one for you. 

o   Personally, I have been seeing my psychologist since 2005; one year after I came home from college.  I was in a bad place emotionally, but could not express the anger I felt (I’m not really an angry-type person).  My therapist has seen me through the worst of my crises and has gotten angry FOR me…which made me feel so much lighter after our sessions.  She has given me strategies over the years that have helped me immensely. 

·         Massage therapies – There are many different forms of massage therapies out there that claim to help relieve stress and depression.  My only warning with this is to speak with your doctor first because you do not want to inflame yourself further. 

o   I use craniosacral massage for two reasons: one, it relieves pain and stiffness in my neck and lower back; and two, it also relieves depression by opening up pathways in the body that had been blocked.  Craniosacral massage is not typical massage.  It uses gentle pressure (no more than that of a nickel).  It works on the spinal cord and opens up nerve pathways.  I have found this immensely helpful in conjunction with traditional therapy and traditional medications. 

·         Self-hypnosis – This type of therapy has been used for years for everything from quitting smoking to losing weight, but it is also highly effective in pain management and depression.  The key is finding a therapist who will walk you through the steps that will work for YOU.  There are many ways get into the deep relaxation needed to get into that state and then it is a matter of finding the way into your mind that will calm your mind and relax your body so you can find peace.

o   I have done this as well.  I use a combination of techniques; depending on the level of depression, pain, and stress my body is feeling.  Sometimes it takes only minutes to get into that deep level of relaxation, and other times it takes longer, having to use more than one technique.  Matching my breathing to relaxation music is a good technique to use as it takes my mind off everything else.  Relaxing each muscle in my body from the top of my head and working my way down my body pairs well with the music and I am usually completely relaxed by the time I reach my knees.  If I feel one part of myself tense up, I start over again, from the top of my head…working my way down again.  Again…each person is different, and if this one technique does not work for you, do not give up, keep looking, and find a therapist who knows about this type of therapy.  Most insurance cover this type of therapy as well, under mental health therapy.

·         Watch something funny, listen to upbeat music, do something creative.  All these things stimulate a part of your brain that release the “happy hormones”, plus they take your mind off whatever it is that is making you depressed.  For a little while, you can forget your depression or illness.  You can just be…YOU.  

o   There were many a days when I just played mindless games on the computer or watched stupid comedies on my kindle, read books that made me laugh or blush.  I did anything that made me feel even semi-normal even for a little while.  I highly recommend www.amazon.com for the kindle.  It saved me many a day.  I don’t know what I would have done without my books, movies and silly games. 

Even though things may seem dark and dreary now, there is a way out. The key (your own special key), is to find the right fit for YOU.  Which method works for you?  It could be one of these…it could be something different.  I would love to know what works for you!  

 

Ivy Shapiro - Becoming a Patient Advocate

 

                                                  From Patient to Patient Advocate

 

 

From November 2000 until about June 2005 I was in out of the hospital more times than I can count for “catastrophic asthma”, syncope, slow gastric motility, and unexplained autoimmune issues. Finally, in 2005 I found both a rheumatologist and pulmonologist who gave me medications to take at home during flares of symptoms (high dose prednisone, nausea medications, antispasmodics for the stomach, and muscle relaxants). They both told me to avoid hospitals unless it was absolutely necessary.

The only thing I was given in the hospital was high dose IV steroids, which ended up making me sicker, for longer, and bags of fluids which did not help my autonomic symptoms at all; in fact, they made some of them worse.

This worked for quite a while, and I was able to avoid going in-patient for years…until recently. My neurologist suggested a medication as a “last resort” to treat my syncope (fainting issues)…and it caused such a severe reaction that despite trying for three days to treat my symptoms at home, I ended up in the hospital on March 9, 2013.

I figured that since ALL my specialists were there, I would receive the best care possible, especially since their neurologist prescribed the drug that put me in that position. I was wrong in so many ways.

The ER physician promptly heard my strider and treated that first (which was understandable); with a breathing treatment and high dose solu-medrol…although he did listen when I asked for the one with NO preservatives, since I am allergic to the inactive ingredients in the regular medications given. Since I was unable to speak, my Mom spoke for me, and described what happened the days before…the fainting, muscle spasms that looked like I was having a seizure (which NEVER happened before), and raising my prednisone up to 60 mg on my own, which did not help consistently. The ER doctor promptly called in the neurology resident consults, pulmonary resident consults, and admitted me right away (although that process took hours longer than expected).

Not ONE resident laid hands on my neck or back, despite me or my mom telling them ALL that I was having such horrible pain in my neck and back. I could barely turn my head, the pain was so severe.

The neurology resident even did a test in the ER that uses a metal instrument to ask whether you feel cold on both limbs…I felt no cold on my right arm, but I did feel it on my left. She did NO follow up test, and laid no hands on my neck or back to feel the spasms that were clearly showing through my skin.

The resident hospitalists disagreed with the pulmonary doctors about how to lower my prednisone, did not read ANY of my notes from my regular physicians that I have been seeing for eight years, which describe how delicate my health has become over the years…and the fact that I live have lived on 15 mg of prednisone for years.

The first person to lay hands on my neck was a nurse, because I kept complaining , where he SAW the muscles on my right side popped out, where my left side was pliable; my right side was tight and knotted up. 

Because the hospitals do NOT list inactive ingredients on ANY of their medications, because they only carry generics, the resident and I sat with MY tablet on rxlist.com and went over each medication that might be right for me to release the spasms.  He acknowledged that the spasms were half of my problem, at that point, and the reason I kept needing high dose IV solu-medrol every 6 hours.  The hope was that if the spasms that went from my lower back and wrapped around my throat released, we could finally lower the solu-medrol.

We agreed on using IV valium to release the spasms, as that is what it is used for: neuromuscular spasms.  He authorized only one low dose and then see how I did in the morning.  The one dose seemed to help, but by morning, the spasms were back, so the hospitalist in charge of my care agreed to give me IV valium every 6 hours, at a low dose, in the hopes of breaking the spasm.  In the middle of night, the IV valium that was ordered was somehow deleted by the pharmacy from the computer system. Not one nurse could get a hold of the resident on call…so I went three and a half hours with NO antispasmodic. 

I was told in the morning that the hospital ran out of the IV medication, and should have been given oral, but that did not happen.  When I was given the oral medication in the morning, it did not work at all.  Finally, hours later, when the spasm cycle started again, the hospital “found” one more dose of IV valium for me, which was only after my Mom went to the patient advocate and told her all about what was going on with me and the treatment I was receiving by the multitude of specialists. They still ended up releasing me 20 minutes after giving me the oral valium, not giving me any time to see if it would help. 

I was sent home in the same pain cycle I came in with…the only problem they “fixed” was my breathing.  They sent me home on oral prednisone, but a taper that my pulmonologist was horrified when he reviewed a few days later…knowing my fragile state.  

My pharmacist and rheumatologist came up with giving me liquid valium to help relieve some of the neuromuscular spasms, as the pills were not helping at all. 

I am still waiting to see if I can get brand name chemotherapy approved, since the generic has inactive ingredients I cannot take, and I have tried the entire immunosuppressant and failed.  The lowest dose of prednisone I am allowed to lower to without an immunosuppressant medication is 20 mg…a very high dose for a 32 year old woman. I wasn’t even formally diagnosed with SLE until I was 30 years old, because I was treated for ten years breathing issues, then gastroparesis, and autonomic dysfunction.  I was told it was more about “quality of life” then anything else.  I am waiting for my “quality of life” to come back after this hospitalization. 

This is the first hospitalization where they knew the problems, and were unwilling to fully treat the issues.  If my Mom and I weren’t my advocates, I am not sure I would have made it out of the hospital alive.

                Addendum:  I have been on the immunosuppressant for two full months now. Neoral seems to be working with helping me lower my prednisone level back down to my “normal” 15 mg dose.  I am now working on lowering the muscle relaxant that was given in such high doses in the hospital.  The doctors sent me home with such high doses that I now am slowly tapering that medication. 

Due to tapering the muscle relaxant, my autonomic dysfunction flared up, a few nights ago and I fainted in the middle of the night, and I got a concussion…my first:  scary, to say the least.  So although the hospital stay did not kill me, the aftereffects have definitely had a negative impact on my health months later.