My Neuropathy

Where do I begin?  My neuropathy began twenty years ago when I had gone from gestational diabetic to type 2 diabetic.  During my pregnancies I controlled my blood glucose with insulin and oral diabetic meds.  I have kept it under very tight control most of the twenty years.  My aic fluctuates from between 5 and 7 but never higher.  I've had a couple highs in the last few years due to being on high doses of steroids (prednisone) to temper down my overactive immune system from having systemic lupus.  It raises blood glucose.

I've done all the meds also.  I'm presently taking cymbalta for nerve pain.  I take the MAX dose of 120mg a day and have been on that dose for TEN years.  I fought my insurance company for it off formulary for a prior auth based on A) without it I would be in withdrawal and very sick since it is a seratonin uptake inhibitor drug and that would cause me to have to go on many expensive drugs and treatments.  And B) The use of cymbalta keeps me from having to take a multitude of other expensive medications, like lyrica, neurontin and elavil and opiates that cost more than just cymbalta.  I explained how well it has worked for me, what a good medication it truly is.

I've been through the burning pain and the freezing pain.  Used to only be in my feet and now I get it up my legs occasionally.  Not too often.  I believe the cymbalta works a little for that type pain.  I don't often have tingling pain either.  I do however have zapping type pain and hypersensitivity.  And they are worsening and relentless.  The last bout was a couple weeks ago and it tested my patience.  The kind of pain I have is entrapment pain under my 4th toe right foot.  Doctors used to think it was a neuroma, but it's not.  So says the MRI and the location of the pain is UNDER the toe and not between it where neuroma's like to hide.  It feels much like someone is lighting a match over and over under that toe.  Each time I wince and it goes on and on this last bout for FIVE DAYS without stopping.  The pain feels like paper cuts.  It stings.  It's a 7 on the pain scale, sometimes it's a 10 but when it goes on for days it tears away at your fiber.  Bit by bit.  It is a nightmare.  I used to have the flares of it every few months and it would last for a few hours.  The flares got closer and closer together over the years and have lasted longer and longer.  It now happens every 5 or 7 days and lasts from a day to FIVE days without stopping, one zap right after the other then another and another.  It's EVIL.  I suffer through it, I take cymbalta, and I'm maxed on short acting narcotics and tramadol.  I've tried capascin, lidocaine, all the neuropathy meds, long acting opiates, every short acting narcotic made, etc etc.  Nothing takes the pain away.

I hold the compression for a few seconds of relief.  Ice doesn't work and neither does heat.  Medical marijuana salves are useless.  What an unbelievably nasty condition this neuropathy is.  I have cortisone shots, radiofrequency ablations and nerve blocks.  RIGHT INTO THE AREA, and it doesn't work.  It does not work.  Nothing works.

To make less of it and for a laugh or two I call it Aunt Agatha's Traveling Pains.  It's funny, yes?  Nothing funny about neuropathy folks.  Whether mine is from my lupus or diabetes, doesn't matter..the story ends the same.  It's here to stay.  It's irreversable damage and it's worsening in spite of excellent blood sugar control.  For anyone who has this, I am truly truly sorry.  My heart goes sincerely out to you.

Thanks for listening!

The EYES have it!!!!

LOL, I'm talking about damage to the eyes.  Specifically retinopathy.  I failed my Amsler test and will find out soon if I need a vitrectomy or laser surgery.  I am not sure if my retina has yet detached, but I do know it is worsened in my right eye in the last year.

I'm double whammied here with both type 2 diabetes (controlled-and I can prove it, lol) and systemic lupus, and on plaquenil.  That's triple whammied I guess!


Diabetic retinopathy (die-uh-BET-ik ret-ih-NOP-uh-thee) is a complication of diabetes that affects the eyes. It's caused by damage to the blood vessels of the light-sensitive tissue at the back of the eye (retina).
At first, diabetic retinopathy may cause no symptoms or only mild vision problems. Eventually, however, diabetic retinopathy can result in blindness.
Diabetic retinopathy can develop in anyone who has type 1 diabetes or type 2 diabetes. The longer you have diabetes, and the less controlled your blood sugar is, the more likely you are to develop diabetic retinopathy.
To protect your vision, take prevention seriously. Start by carefully controlling your blood sugar level and scheduling yearly eye exams.

Here are the FIXES for retinopathy via the Mayo Clinic online resource:

• Focal laser treatment. This laser treatment, also known as photocoagulation, can stop or slow the leakage of blood and fluid in the eye. It's done in your doctor's office or eye clinic. During the procedure, leaks from abnormal blood vessels are treated with laser burns. Focal laser treatment is usually done in a single session. Your vision will be blurry for about a day after the procedure. Sometimes you will be aware of small spots in your visual field that are related to the laser treatment. These usually disappear within weeks. If you had blurred vision from swelling of the central macula before surgery, however, you may not recover completely normal vision. But, in some cases, vision does improve.
• Scatter laser treatment. This laser treatment, also known as panretinal photocoagulation, can shrink the abnormal blood vessels. It's also done in your doctor's office or eye clinic. During the procedure, the areas of the retina away from the macula are treated with scattered laser burns. The burns cause the abnormal new blood vessels to shrink and scar. Scatter laser treatment is usually done in two or more sessions. Your vision will be blurry for about a day after the procedure. Some loss of peripheral vision or night vision after the procedure is possible.
• Vitrectomy. This procedure can be used to remove blood from the middle of the eye (vitreous) as well as any scar tissue that's tugging on the retina. It's done in a surgery center or hospital using local or general anesthesia. During the procedure, the doctor makes a tiny incision in your eye. Scar tissue and blood in the eye are removed with delicate instruments and replaced with a salt solution, which helps maintain your eye's normal shape. Sometimes a gas bubble must be placed in the cavity of the eye to help reattach the retina. If a gas bubble was placed in your eye, you may need to remain in a facedown position until the gas bubble dissipates — often several days. You'll need to wear an eye patch and use medicated eyedrops for a few days or weeks. Vitrectomy may be followed or accompanied by laser treatment.

Surgery often slows or stops the progression of diabetic retinopathy, but it's not a cure. Because diabetes is a lifelong condition, future retinal damage and vision loss are possible. Even after treatment for diabetic retinopathy, you'll need regular eye exams. At some point, additional treatment may be recommended.

 Of course I wonder if my damage is from lupus, diabetes or plaquenil, but I learned the hard way as of late that it's all about the treatment.  Sometimes symptoms can be so painful or dangerous to your health that it doesn't matter how you got there..just that you find a way to get back where you belong and put your body back in sync.  Here's what retinopathylooks like:

 I will, of course, keep the blog updated on my EYES and possible treatments for the condition.  ;)

Shana Tova u'Metuka

Shana Tova u'Metuka – a good, sweet new year." To ALL! May your year be a prosperous and happy one!

On the lupus front:  Almost 3 weeks into CellCept and I'm doing good.  Some stomach issues, and I'm taking laxatives to help.  Getting nose and mouth sores but they aren't getting worse, just healing and none have turned into lesions or ulcers.  That is a plus.  My energy level is improved.  I have not had any more instances of bursitis in my hips.  Neuropathy pain has been minimized and I have not had a TN attack.

My cervical problems are increasing, pain in the neck they are!  Besides the OA and the damage to connective tissue, I've noticed that early mornings I am stiffer longer and my neck and head are held in a sideways position, as range of motion increases throughout the morning, I straighten up.  I have had the telltale twitch under my left eye of the TN attack and hemofacial spasms but they haven't progressed to anything more than that.  I still fret that although I think I am very good hands for the lupus, my cervical spine is worsening and I'll end up sideways with cervical dystonia if I'm not managed more aggressively.

This New Year will come with new treatments and new developments.  I hope to hear about an SSDI hearing date soon.

For anyone who is reading my blog, thank you and I wish you a sweet New Year.  It is Rosh Hashana, a time of reflecting about our relationship with God and Earth, and atonement, who shall live and who shall die, who shall prosper and who shall be impoverished and who shall be enriched.  For anyone listening, have an apple and sweet honey to celebrate our New Year.

Thank you, Julie

 

CellCept Day Two!

I saw the new rheumatologist and he put me on cellcept.  I'm taking 500mg twice a day.  Today is the second day.  The first day I felt a bit flushed and preoccupied, maybe even a bit tired, but today was much much better.

I have a really good feeling about this medication.  Since it works at the cellular level and is a chemo drug, one they use to suppress the immune system in transplant patients so that your body doesn't reject a new organ., I think that it might be a really good match for me since my ANA labs the last year and a half the labs have been unable to quantify the ANA due to immune complexing issues. 

I like the doctor alot, he is Dr. Trent Smith, Banner Health, Phoenix AZ.  He wears the cutest bow tie, has a nice personality, pays attention (listens) and seems genuine and straightforward.  I feel I am in good hands and I feel I can stop fretting and worrying about my care. 

Cellcept Day Two: No hair loss.  No tiredness or fatigue.  No headache.  No side effects at all.  Fantastic!  I'm stoked!!!!!!

Brain Fog

Feels like life is moving but I'm standing still..my brain just musing passively...parusing nothing.

Not a good time to make decisions although I can still laugh at jokes
which are all I want to hear.  The rest is mumbojumbo.

Someone else make the coffee, fix the dinner, make the drinks.  I can only do what you put in front of me.  Even then don't expect my best.

My get up and go has got up and went
And left what you see here.  A shell.  Inside is squishy jelly.  No brain cells here.

Just an ameba.  The most basic form of life.  My shell.  My armor. 
Guarding nothing.  Nothing but squishy jelly.  What a joke.

I'm not laughing, though I'd like to be.  Not smiling, though I'd like to be.  Not feeling, though I'd like to be.  Empty.  So empty.

Such is brain fog.  I didn't lose my keys.  I didn't forget to feed the dog and cat.  I don't know what I forgot...such is real confusion.  To have to put my day plan into others to take the first move.  My moves are secondary.  Time to jump up?  Just say so.  I can do that much.

There's a big open space like a field in my mind
And I'm on it grazing.  Nothing else.  The heat of the sun hits my back and feels good while it brightens up my skin.  The blue sky goes on forever.
I'm but a speck in a vast wilderness of green prairies and flatlands
The picture perfect clouds roll slowly by my emptiness
They all look the same.  Where is my voice?  My constitution? 
Why is my spirit so lost?

I'll have to ask the fog itself.  Release me and give me back my thoughts, I say.
They're mine and only for me.  What good are they to you?  Only I can turn them into meaningful words and actions.

Such is brain fog.

The windows in my apartment are covered not once but twice with blackout drapes.  No sun, yet the artificial light luminates the room enough for me to be fooled into thinking it's daytime.  What else is fooling me besides the light?

The tv chatters, the phone rings, the alarm goes off, the printer hums and the dog barks.  Even the keyboard clicks as the words hit the page, yet my mind is quiet.  Someone else attends to it.  All I can do is watch.

I'll jump when you tell me.  Put the words in front of me so I can reach them and I'll press the keys.  Free my entrapment, break the armor, expose the jelly and the joke.  I can face them.  At least I have that function.  That is true spirit.  That is my lifeblood.  That is what is left when the rest gets foggy.   My essence is safe. 

The fog is only a cloak hiding behind my double black out drapes.  It is I who fool the fog with my artificial  light.  I decide to make it daytime and my fingers press the keys with their orders from the very brain that thought it was incapable just a moment ago. 

The clouds now take shapes along the skyline and the blueness of the afternoon sky overwhelms my senses. 

Such is brain fog lifted.

I saw a NEW RHEUMIE today!!!!!!!!!!!!!!!!!

ent to see my new rheumie today, I'd been waiting months since I fired the last one.

I like him.  He wears a cute little bowtie.  He said it meant something that I have immune complexes interfering with my ANA labs lately and is sending me to an immunologist.
He said my kidneys need a biopsy to make sure they are ok now and really in remission.  He said with all my issues I need more help than just high doses of prednisone and put me on cellcept.

Bingo.  He hit my 3 main concerns all on his own.  Now THAT's a doctor.  The other one can go join his other little duck friends ...quack quack quack...  ;)

I'm so glad I went.  It was over an hour away and I left home at 6am without coffee.  I'm trying to catch up with that deficiency now.  Blessed be caffeine.

I should have switched doctors sooner!  Please if you are not comfortable with your doc or your treatment, see another one.  It doesn't mean the next opinion is the RIGHT one, but it may open some doors for you that previously were closed!  Do it!  I have a very good feeling about this one!!!

Ode to Decompression Surgery

There once was a girl with a whole lot of curl

and feet that just weren't right   

so one day she did scream

to her docs it would seem   

she really just wanted a fight.    

Then one kind ole doc  

looked at his clock  

and said we'll set up a room where we'll serve                

and we'll cut out your bad nerve...   

and take your pain all away.     

In other words my nerve entrapment in my right foot hasn't stopped for FOUR agonizing days and is sucking the life out of me so my neuro and pain doc r trying to get me admitted for surgery.      ........and thats that!