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It has been two years since my brush with near lupus death.  It has been more than two years since I really started going downhill with the hair loss, the fatigue, the debilitating joint pains, the rashes, the fevers, the vomiting, the unexplained vision changes, the urine retention, the migraines, the numbness in my extremities and the countless other tiny symptoms that were happening at the time that everyone seemed to brush off as figments of my imagination or “just stress”.

Things have changed a lot in the last two years.  Changed for the better.  I guess when you are starting at zero you really have nowhere to go but up.  But for all the improvements that have been made there are also the things that remain.  The things that may never be fully better.  The parts of myself that I have to mourn and accept even though I’m not quite ready to give up hope yet.

Things that are better.


I can walk.

Yep.  I can walk.  I can walk mostly without a cane.  I still have days when I choose to use it because even though I can walk, I can’t walk comfortably.  I do my best to grin and bear it.  I know that the walking looks pretty normal on most days.  If I never said anything no one would know the difference other than I’m a bit slower than most.  But it hurts like hell to walk.  The nerve damage hasn’t been getting better for at least the last year.  It seems to have plateaued.  On great days I’ve been able to manage 10,000 steps.  On bad days I can’t manage even a few without wanting to cry.

My lupus is under control.
I still do my bloodwork every month.  It has been great.  It has been normal!

I look great.
Well at least that is what I am told by everyone.  But even I feel like I am looking good after all that weight gain and hair loss and everything else.

Things that are the same / or not getting better.


 

I’m tired.
I’m tired every single second of every single day.  I wake up exhausted.  I do my best to sleep 9 hours a night, but probably end up at about 7-8.  I wake up and feel like I have a hangover every day.  I struggle to stay awake during the day.  I try to take a nap in the afternoon if I leave work in time.  The fatigue makes it hard for me to concentrate.   I feel like my head is in a giant cloud most of the time.

I’m in constant pain.
The pain only stops when I am resting.  Medications don’t make it better.   Marijuana doesn’t make it better.  It is a constant irritation that is exacerbated by walking.  Even sitting too long becomes painful.

I can’t pee.
Still can’t pee.  Will probably never be able to pee regularly again.  But I get bladder botox to deal with the neurogenic bladder issue so at least I don’t feel like I have to pee every 20 minutes which is a huge relief.

I’m still on drugs.
Still on the Cellcept and prednisone.  Doesn’t look like I will get off of those anytime soon.  Not great.

Things that have changed that I wouldn’t give back.


 

I appreciate the little things.
Waking up early.  A nice cup of tea.  A random email from an old friend.  A snuggle with the kittens.  Everyday things seem a little bit more special.

I’m less inclined to be angry.
Don’t get me wrong.  I still get angry.  I just don’t get wrapped up in all the bullshit that I used to.

I admit when I am failing or hurting or need help.
I’ve always been too strong for my own good.  I was never willing to accept help.  I was never willing to listen to anyone.  I hope that I am better at asking for help or letting people know when I am hurting these days.

I love more freely.
I care and love more openly than I ever have before in my life.  I cry.  A lot.  I cry to my friends who love me and reassure me.

Conclusion


 

Seems like that list is a lot of physical things that continue to linger, but I guess the tradeoff is having grown emotionally in the past few years.  Here is to more healing in the next years.

cure

I’m just going to say it.  I’m so sick of people trying to offer me ways to cure my lupus.  Yes.  It would be amazing if there were a cure for lupus.  It would be the best gift in the world to get rid of this disease in my life.  I would love nothing more than to wake up and have no more residual effects from the transverse myelitis.  There is nothing I dream of more than to have a day that I can run again and a day that I don’t feel completely exhausted.

But I know that a quick fix is not possible.  I know that I have a chronic disease and it isn’t going away because I go on a retreat or I do yoga or I eat vegan or I take a special pill.  There is nothing that is going to make this go away and that is what I have to live with.  That doesn’t mean that I am broken or less of a person.  It simply means that I have to deal with what I’ve been given.  That means that I have to learn how to best manage my symptoms and find what is right for me.

I know that people really do mean to be helpful when they offer advice, but it gets tiring.  It is hard for people to understand that chronic conditions are mostly not fixable or something that you get over like a cold.  We have to deal with a lot of pain and uncertainty in our lives and it feels trivialized when people offer up their “cures” as if we somehow have a choice in the matter and we could heal ourselves if only we cared enough, read the right books, did the right exercise or diet fad, etc…

So next time you are talking to someone about their chronic condition try to remember that we have enough to deal with and offer up a hug instead of fixes.  If someone is tired how about staying in for an evening and watching a movie instead of dragging them out?  There are a lot of ways to be kind without being condescending.

A Duke University research team published study results on Monday that revealed the immune system of a patient with both lupus and HIV made neutralizing antibodies, which is essential for an effective vaccine response.

The patient has systemic lupus erythematosus, which causes the immune system to attack the body. The study, published in the Journal of Clinical Investigation, said few people develop antibodies against HIV.

“Over the years we have searched for and now have found one person with SLE who was also chronically infected with HIV to determine if this person could make broad neutralizing antibodies,” Barton Haynes, the director of the Duke Human Vaccine Institute and senior author of the study, said. “We found that the patient did indeed make these important antibodies, and by determining how this immune response occurred, we have enhanced our understanding of the process involved.”

Haynes said he discovered that some broad neutralizing antibodies cross-reacted with tissues. These autoreactive antibodies were kept under control by immune tolerance controls that sense antibodies and prevent them from reproducing.

Haynes’ theory was the immune system labeled the antibodies as harmful and worked to eliminate them, providing an escape mechanism for the disease. The research team theorized that when the body’s immune system is compromised with an autoimmune disease, immune tolerance controls are defective and broad neutralizing antibodies are reproduced.

“The cross-reactivity of the broad neutralizing antibody with dsDNA was very surprising and provided support for the hypothesis that broad neutralizing antibodies are similar to the autoantibodies that arise in lupus patients who are not infected with HIV,” Duke Assistant Professor of Medicine Mattia Bonsignori said.

Bonsignori said that patients with lupus are not immune to HIV and still should avoid contracting the disease.

“Our study of this person with SLE and HIV has been critically instrumental in our understanding of the unusual biology of the remarkable host control of antibody responses to the conserved broad neutralizing sites of the HIV envelope,” Bonsignori said. “We are hopeful that these insights in lupus will aid in our implementation of strategies for designing experimental vaccines capable of overcoming the host tolerance control of broad neutralizing antibodies.”

A new study has been published that suggests that lupus headache do not exist.  I’m going to have to say that I find some of these kind of studies to be a waste of time.  I guess you can say a headache is a headache is a headache regardless of if you have lupus or not.

I, however, have definitely experienced a “lupus headache”.  This headache was, of course, completely ignored by my specialists and I was written off as just having a plain old headache.  Until I had brain seizures.  Then all of a sudden I guess it was a real lupus headache.

Studies like this do nothing to help lupus patients.  It seems rather dismissive by the medical profession to say that it doesn’t exist.  Typical of our wonderful medical system.

The phrase “lupus headache” may be a misnomer, new research suggests. In a prospective examination of 1,732 individuals with systemic lupus erythematosus (SLE), clinician-investigators found a 58% headache prevalence over 10 years. However, only 1.5% of these individuals met the criteria for lupus headache and 96.3% of these cases resolved independently from lupus treatments.

Pain Medicine News – Study Suggests Lupus Headache Does Not Exist.