Cytoxan

Starting Cytoxan in pill form tomorrow.  Marx wanted me to do infusions but we have a $5000 deductible which would need to be met.  The Rituxan infusions i did last month did no good and cost $14,000 each!
Still grasping at straws.   Also trying to get approval for Ofev, which was approved for IPF in Oct.

My latest blood work shows the same amount of inflammation plus my Vitamin D and B12 are still low despite 50,000 units of D plus B12 shots weekly.  I am also anemic again.
Not looking forward to losing my hair.  I may freeze this winter.

Can't walk at all without wanting to pass out. Saturation rate goes into the 70's then lower if I continue to move.  Up to 8 to 10 lpm 24/7.  Still feel out of breath at times.  Diffusion rate down to 12.

Good news is the insurance approved a wheelchair and it should be here this coming week.

Lupus Brain Fog

Understanding the Unseen Realm of Lupus Brain Fog
by Kim Nault ©

First published in The Lupus Magazine

An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person. The lupus brain fog is classified as a manifestation of organic brain disease and is of one of the 19 manifestations of NP-SLE/neuropsychiatric SLE that has a broad spectrum of manifestations, including psychiatric disorders and neurological syndromes of the central, peripheral, and autonomic nervous systems. Each manifestation is vast and complicating and far outside the scope of this sole article.

Sadly, the actual field of NP-SLE is still in its infancy, there is not much research done on this vast topic and not too many doctors fully understand this form of organ involvement. Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity.


I have heard many heart-wrenching stories, of patients whose very own doctors have ignored or even minimized their conditions and complaints as mere irritants. Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Lastly, if such large amounts of lupus patients are living and battling with the lingering consequences of brain fog, than why isn’t someone in the research field really pounding the scientific pavement for us to pinpoint the exact cause of this and yield our patient population better treatments? We deserve better diagnostic tools and therapies in our lives while we try to climb out of the trenches of the cognitively challenged.

There are also a high number of lupus patients with the secondary Antiphospholipid Antibody Syndrome/APS/Hughes Syndrome as well as those with concurrent fibromyalgia, both who seem to encounter more obvious signs of the insidious brain fog. There are many running jokes among patients regarding the effects of the brain fog monster in their lives. While we have to admit that some of the brain fog incidents are indeed hilarious and even downright entertaining to our loved ones there yet remains the silent population within the brain fog group who are overwhelmed with the mental and emotional impairments brought on by NP-SLE.

The lupus brain fog can cause:

• Cognitive Dysfunction (impaired abstract, concentration & reasoning skills)
• Short-term Memory Loss
• Verbal Fluency Dysfunction (difficulty finding words)
• Confusion
• Impaired Recall
• Depression
• Anxiety

Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating. I recall a forum discussion where Angie Phillips (NP-SLE/APS patient-advocate, founder/ creator of Ardent Cerebrations: Musings of Lupus Survivors!), earnestly explained that for her, the disabling effects of NP-SLE have been far more devastating than that of the pain caused by SLE. That she has incurred more disability from the cognitive issues relating to CNS lupus, that she would gladly take the pain and have her mental faculties restored to the way they used to be. I too, have described to my loved ones that I have teetered on near organ failure and have accumulated physical impairments, but not to have the consistency of my cognitive sharpness and verbal fluency has rendered me more defeated than anything else I have ever faced.

A few months ago, while at my primary doctor’s office we were discussing organic brain disease and she explained that neurologists had discovered that commencing to treat stroke patients with SSRI (selective serotonin reuptake inhibitors) antidepressants immediately following stroke promoted faster neuron repair and recovery from their strokes. She surmised that if antidepressants use was benefiting recovering stroke victims than people with organic brain diseases will also benefit from using them. Before you scoff at the idea of swallowing yet another pill, you might consider having a frank discussion with your doctor about whether you may or may not benefit from taking an antidepressant.

If you have a health insurance coverage that will cover neuropsychological testing, you may consider having that done. Once the tests are completed, the psychologist will make recommendations of activities that you can do to exercise areas of your brain that are affected by the brain fog. I know some patients who do brain games to exercise their minds and keep themselves as sharp as possible. There are very good games on the internet developed by neurologists and neuropsychologists, and a small amount of time surfing the Web may provide you with a good site to frequent. Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!

Coping and Strategizing – Lupie Cognitive Survival Tips:

• Do not multi-task (it can prove dangerous)
• Do not overbook your daily schedule
• Do not over commit yourself
• Prioritize appointments/events/activities (don’t double book things on the same day)
• Determine your peak energy time of the day (schedule needs around that time)
• Reduce background noises when needing to focus
• Use only one calendar (mark doctor’s appointments in one color)
• Set timers for reminders (cellular phones and your PC have different applications)
• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)
• Keep things simple
• Learn to say “no” (we do not have to commit to every event or activity)

Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope.

*The best resource in your healthcare is your own doctor. The Lupus Magazine does not endorse or recommend any medication or drug company. This article is informational only and should not replace the medical care of your doctor.

I refuse to give up!

I got my vent a few weeks ago and have used it for going to acupuncture, a short shopping trip with Æmilia for her birthday and for a quick shopping trip with Chris.
It is almost too much work to use it.
Strapping on the unit is easy.  Carrying one tank is not hard but negotiating the damn hoses that are too long is a royal P.I.T.A.  I need to use bigger tanks which wasn't supposed to happen.  I am using more O2 than I did on the demo.  Obviously there is no solution to moving easily without dragging O2.  But I CAN walk with it whereas I'd usually need a wheelchair or scooter to go out.
I guess it is time to accept my limitations.   So what if I shouldn't be alive at this point.  I REFUSE to give into this crap called IPF!!!

A portable Ventilator!

Last week a rep from Breathe Technologies met me at Dr Marks office and did a demo of their new non-invasive ventilator.
He said I'd have to do two 6 minute walk tests. One on regular oxygen and one with the ventilator.
I laughed at him.  I KNEW I couldn't do it.  Well, I lasted 45 seconds (on 8 liters) for the first test.
Recovered for about 5 minutes and changed to his tank (the ventilator needs a specific canister that I'd need to change to)
There are three settings and I needed the highest to walk but I did it!  For 6 minutes! On 4 liters!
My SAT rate stayed at 99!  It's never on 99 unless I am staying totally still on 7 to 8 liters.
The ventilator weighs just about a pound.  It needs a specific "pillowed" cannula and the tube right under the nose is double the size of a regular one and is UGLY, but I can breathe with it.

I instructed Ann to tackle the guy for the machine but she refused so we're waiting to see if I can get insurance approval.  If not the machine is $5500 and I'll have to sit in my wheelchair at a major intersection and beg if I have to in order to collect enough money to buy one.
I might even be able to go to physical rehab again!  My muscles are SO weak now from not being able to move without being out of breath and cramping all over.

Shar came for four days last week and it was great.  I ended up having too many dr appts and it was nice to have her with me when I saw Marks.  We are considering Rituxan rather than Cytoxan because I really can not tolerate throwing up and possibly aspirating again.
Marx is trying to get insurance approval.  We'll have to wait and see.
Arizmendi sent me to see Greiner to make sure the wicked fluid retention in my leg wasn't due to heart issues.  An EKG and Echo later I am fine and I think we finally have the swelling under control and the cellulitis gone.  At least my leg doesn't hurt as bad anymore.  More Scripts... Potassium and magnesium.

Shar has offered to take a leave of absence when I feel I need someone here 24/7.  She is worried I'll be afraid but I'm really not yet.  I don't want to die.  I REALLY don't want to.  I want to see all my babies grow up but it isn't going to happen.  It is so hard to move at all now but if I stay still and calm I can breathe easily and be ok.  Existing more than living but it's better than not existing.  I still have lots of books to read, sewing projects to plan and conversations to have.

Ann brought the kids over and they went swimming.  Gareth liked his Dominos but Æmilia really loved the art kit and clay.   They played lots of games on the iPads after dinner.  Grandpa brought Firehouse subs because his middle appt. canceled then they couldn't even quote the last appt due to mold.

Sick as can be yet again

Went to Arizmendi because my calfs were hot, swollen and painful.   Had a Doppler done Wed. Afternoon that I thought was going to kill me.  My inner thighs are black and blue and painful.

Thank God, no clots found but even with antibiotics and a second diuretic (Bumex) my ankles are still swelled.  Fever on and off all week and now wicked pain across my back.  It feels like the flu with no runny nose or more congestion than usual.  Slept on and off for three days now.  Ann has brought the kids by and they have been so great.  They want to go swimming and I just can't get my act in gear.

I'm mobile!

After weeks and weeks of trying to get approval for a decent scooter or wheelchair we finally caved in and bought a used one on Craigslist.  After the mess of tring to find a used POC. I was really nervous about spending the money and having an unusable item but I think all is well.  If not we're out $450.
The couple that sold it to us said they'd bought it used, in Sept.  for a niece who had a soccor injury.  They put it in Chris' car for us and when we got home Chris backed up to the block wall in front of the apt and the height was perfect.
I took it for an intial spin, out to Huebner, almost to Bandera but a pole blocked me from continuing but I may be able to get past it if Chris moves the right arm in a bit.
Met Tina, the other "baby" of the Villa's.  She is also 56.  Says there is a new guy who is 55 so we aren't the youngest here anymore.
Also met Liz, I think was her name.  Tall beautiful woman who has a 7 lb.teacup chihuahua that has a  wicked deep bark.  Adorable.
Sat outside most of the day while Brye and Tope cooked.  I made German Potato Salad this morning and now I'm tapped out even though I probably slept 16 hours last night ~ on and off, of course.
Facetimed with Bran and Megs.  Talked to Miz for a bit.  Read a bunch and almost ready to sleep yet again.

No scooter yet.   Supposedly I need to pay $600 if I want one, which is half the cost of a cheapie model.  I don't have $600.

Chris borrowed an electric wheelchair from Janine at work but it needs a charging cord.  
That will cost $350 (non-returnable) and no guarantee the chair will work if we get it.
Looks like I'll have to look for a used one on Craigslist or at a pawn shop.  I just can't walk more than a few feet without wanting to pass out.

Dr. appointments this week with Garcia and Saigal plus two acupuncture appointments.
Christa, Avery and MaryEllen came for the weekend and Brianna and Anthony are coming on Tuesday.  Margo and the boys are also supposed to stop in.

My new normal sucks

No other way to put it.

I got the new, larger concentrator last week.  I really believed the being able to turn it up to 8 liters to walk around would help but it doesn't.  I no longer feel like I want to pass out if I stand up but it hasn't helped nearly as much as I'd hoped.
SAT rate falls to the low 70's if I move at more than a crawl.

I should be getting a scooter this week.  Hopefully insurance won't drag it out too long.

Went to the movies!  BIG mistake!

On Thursday Sally picked me up and we went over to the Regal Theaters on Vance Jackson & DeZavala to see Saving Mr. Banks.    I left my second canister in the car assuming I'd need just the one as long as I sat still after recovering from the stroll in.  Wrong!  
From the minute we sat down I had to keep turning it back up from 3 to 5 lpm (and I wasn't saying a word or moving at all)   Sally had to go out and retrieve my other bottle.  Wicked time getting to the car and then at least a half hour to recover once I got home and had the continuous flow set as high as possible.   for the past few days I use the big unit and a canister also when I have to move around.  Good temp. solution.
Called Providacare again and they said they didn't have the orders for a bigger concentrator.  Called Susan at Dr. M's.  Her comment was a very droll "They Lied."   Today I called everyone again and as of noon Jerry is on his way to deliver the larger concentrator.  Still not sure how the getting out of the house thing will work but we'll deal with that later.
Seeing Marks later this afternoon.  I don't think I'm "sick" right now.  I just think this is my new low.

Been in the cottage for 4 months now and I'm adjusting to my new normal.
Can't walk 5 feet without getting out of breathe.  Dr Marks ordered me a concentrator that will go up to 10 lpm.  I'm currently on 5 all the time now except when filling canisters.    My car wouldn't start last week so i walked to the office slowly.  Coming back I saw "glitter" of white light as I practically crawled home.  No more walks for me.  Dr. Ordered a scooter but insurance reimburses almost nothing.

We are so in debt it is killing us.  Finally got approval for the Adcirca so that is a $2000 headache taken care of but The Vest is going back because they've decided not to approve it for home use.  I can get 7 treatments a month. vs twice a day. Chris had to have a tooth pulled.  Borrowed $500 from Sharon. I've cut down on dr. Appts because of the $35 co-pays.

Met Fanny who moved in behind us. (Chris is still here and probably not going to Alburqueque)  she checks on me often.  Brought over some great cabbage and potatoes last week.

Stan is here visiting Ann this week.  She and the kids stayed over Tues night then they took me to Balance to get pinned. Chris is in Corpus for the week.

Yard sale on Sat.  Sally & Jason will set up so they can move easier next year.

An Eventful Few Months

Sick all of Sept and Oct.  Finally, after two courses of antibiotics I agreed to go into the hospital for testing.  Oh yeah, had a second right heart cath the week or two before I ended up in the hospital.

Was put on Adcirca, which the insurance company spent months denying payment on.  My heart is finally damaged from the lack of oxygen.  Still no approval but we have new insurance so who knows...

Last PT session on Oct 24. When Ann had strep and I was finally convinced to go see Marks again.  Saw Heather instead.

I also saw Dr Saigal, a renal specialist, for the edema and he put me on Lasix up to three times a day.

Back to the hospital stay...

I went in on Monday Nov. 11th   Had a lung scope done on the 12th.  Met Dr Zajac, an infectious disease dr after they found three different infections and thought I may have aspirated something.  (Ya think?!?   With the way I cough and gag I don't doubt it!)

Then they sent in a gastric guy; Margo's cousin Dr Garcia.  He ordered a stomach emptying test to be done on Wed night then again Thurs morning, if I remember correctly.

Almost forgot; I had a cracked rib, from coughing.   Tests showed my stomach isn't working at all.  The juice I drank at 7 on Wed night was still in my stomach at 9 the next day.  

Susequent testing in Dec showed wickedly bad GERD and Barrets Esophagus (mom took me for that testing at NC Baptist). Garcia also diagnosed me, after a cpepcide test, with dysmetabolic syndrom.  Put me on Metformin and I dropped almost 20 lbs in two weeks.

While I was in he hospital Ann and her friends moved a bunch of stuff into our new cottage at Leon Valley.  Three garage sales in Oct and Nov grossed almost $3000.  We sold the pool table, fridge, Chris's tools, some dressers, the coffee table, shelves, the treadmill, camping and Christmas stuff, the patio set, rugs, tons of kitchen stuff, car stuff, the A/C we never opened and lots of little junk. AND we STILL have a full storage unit.