12/16/12  SYMPTOMS AND THEN, GRIEF/ANGER IN CT.    I saw my neurologist this week, had another blood test for antibodies, and now am undergoing a third 3-day in-home IV of methylprednisone, with an MRI scheduled for next week and an appointment at Wills Eye Hospital for my double vision symptoms.

But then at the doctors office, she asked me about what was happening in the news. All I could think of was the fiscal cliff, even forgot about Sandy, the devastating hurricane that hit the NE coast. But two days later on December 14, a story out of Newtown, CT shot a hole in all of us. Another mass school shooting...an elementary school. Twenty 6-7 years olds gunned down and six staff. By a 20 year old asshole, who, fortunately killed himself, and sadly his mother.

Hideous nightmares like this always spark gun control debates, as it has done again, but never ever resolve them...or even address them in any significant way.  Of course, a tearful Obama said it would this time, but we all know it will take the son or daughter of a rich pro-gun fanatic blasted to bloody hell before any of those idiots decide that guns are poison.

I know restrictions won't solve the problem, but it will make it harder for evil to attain the guns...or longer....or something. And what's wrong with that? Everything in life is difficult when it's worth doing. Besides, there's enough professional criminals out there to keep up our ever-growing record of senseless murder of innocents, without letting pissed off kids join the act. God help us all.

STILL ME.
I'm officially on disability now. I guess my medical HE history spoke for itself. Sometimes I feel it; most times I don't. Still I look for work; I need to feel a part of something. I feel strong inside, and eager to keep my wings on the fly. I'm honest with employers, though. Have to be. My work ethic is untouched. I still want to do and do well. In everything. My body may fight here and there, but I feel I can handle it most times. I can only know for sure if I try, and I will try. Over and over. I can legally work on disability, at least for a time; time enough for proof. And I will. I'm still the best of myself.

July 20, 2012   NEW DOC, NEW PROBLEMS

I anticipated problems once Dr. K left. They changed my next appointment to one with another doctor, moved it up a month and never told me. I have no record of it despite what they say (I always write down dr. appts.) and refuse to see another doctor; so I made another appointment with Lippa in December, 4 months later! Not happy.

July 17, 2012   FOOT LOOSE
I had foot surgery last week....a joint replacement, bone spur, and cyst removal; the pain increased over the past 4 years. Of course, getting clearance for it from the neurologist's office was a major snag, since Dr. K. is gone and Lippa withheld consent till the last minute. But in all...may be able to walk normally again, soon. With shoes!

In the meantime, my HE story continues at Drexel Med . A mix up between the foot surgeon and the new HE doctor changed my August appointment with Lippa and to an appointment with Naire??? next week, but no one told me. So when I got a confirmation for the Naire appt., I called them. Resolution still pending. Nothing's easy.

My foot feels better though. Stitches come out next Thursday.

I have not kept this blog in order, however, the following several posts are from 2011  in descending order starting with my diagnosis in 8/2011. So if you're interested in my HE experience particularly, read the red copy backward, from August 2011 thru November 2011:

November 29, 2011, MY FIRST ENDOCRINOLOGIST

My new endocrinologist didn’t readily accept that I had HE. He said it was way too rare and that my thyroid alone could have caused my latest symptoms. I was skeptical. What about all those other times when I had unexplained occurrences? I didn’t go into all that at the time; I felt he wasn’t interested. He did say that I shouldn’t have blood work done so soon after steroid treatment because the steroids could cause a false TSH reading. So I postponed my lab appointment.

November 18, 2011: LOST IN JERSEY

Well we got lost trying to find the endocrinologist the first time. They had said right across from Kennedy Memorial.  Who knew there were two Kennedy Hospitals in our area.  Naturally we wasted a day by going to the wrong one. I missed that important distinction. It wasn’t the GPS’ fault; it led us in the right direction, so of course, we shut it off. My husband wasn’t on his game either that day.

November 21, 2011: IN-HOME IV TREATMENTS

I had the first one this morning. A nurse, Deana, came to my home and gave me an IV with another gram of methylprednisolone in 250 ml solution; it took about an hour once I was hooked up. My doc said my insurance would pay for the in-home care, and I wouldn’t need to go to the hospital this time. I did get terribly lightheaded for several minutes, but Deana said that could happen and needn’t cause alarm. I get two more treatments in the next 48 hours (the nurse showed my husband how to administer the solution now that the IV is in) and then another blood test to see if it helped decrease my titer. Maybe this is it? But Dr. K. warned that it may be a monthly maintenance procedure; she’s not sure. We’ll see; at least I’ll have this heplock out by Thanksgiving Day! And no hospital! That’s something to be thankful for!

November 10, 2011: TEST YOUR TITERS.

So I’m not ‘normal’ yet; was I ever? (there’s the next blog!) My titer is 92. Yes, another new word….basically the amount of antibodies in my blood. At the beginning of all this it was in the 200s, so measurable progress was definitely made. However, according to Dr. K, I shouldn’t have a titer at all! Who knew?

I met with her today and told her my vision was still frequently doubled and my stamina wasn’t what it used to be, but other than that I felt pretty good! And though I wasn’t depressed any longer (a huge and very noticeable benefit), I didn’t trust my ability to resume working. She said she would support my application for disability, but suggested that I get input from my neural psychologist first because that would strengthen my position as far as the government was concerned. But that appointment wasn’t scheduled until December 7. Either way, she said, HE is a chronic condition, and it seemed that I would require further treatment with either more steroids or IVIG. So off to Quest again was I for another blood test!

After Hahnemann:  FIRST FOLLOW UP, 9-2011

Still showing signs I shouldn’t be. Balance isn’t strong, vision is still doubled; urine infection isn’t gone yet, but overall, I felt decent. I was still undergoing a sense of euphoric relief from my experience, so I was a happy camper.

Letter to my ex boss

LEAVING DAY

I was headed home today, September 12, my hubby’s birthday. But I had something I had to do first; write a letter.

ON DISPLAY

An unfamiliar woman walked in my room pushing an empty wheelchair and asked “Are you ready?” It didn’t register with me at first, but then I figured it out; she was there to take me to the Grand Round, a weekly meeting for the neurology staff at the hospital.

IVIG

BLOOD PATCH

HEADACHES

LUMBAR PUNCTURE

VISITORS

STERIODS, HEART MONITOR??

DAILY BLOOD PICKS, PRESSURE, TAKE BLOOD

STAFF

TEACHING HOSPITAL

Job loss

FITNESS FIT        I told my trainer I couldn’t do this. I was on my back and had a weight in my right hand, which I was holding over my head parallel to the floor. He encouraged me and finally I strained enough and completed the situp. On my third try, my head on the floor, I began to feel dizzy. I stayed put for several seconds and my trainer offered to help me up. I tried to stand but before I got there, I vomited all over poor Arnez. He and another gym employee helped me to a chair and I sat but I was shaking so much, I couldn’t take my glasses off, or hold the water bottle they gave me. They called my husband to pick me up and we went to the emergency room of hospital I was scheduled to enter the following Monday.

GYN first

OK. I didn’t actually find her. I was sent to her. My GYN saw that something was wrong with me during my routine check-up, which occurred one week after my lay-off. He told me I needed two things: a therapist and a neurologist. He had reason; I was crying in his office!

Fortunately, he made an appointment for me with a neurologist in his practice and his office called and told me I was scheduled to see a Dr. K at Hahnemann Univ. Hospital. The appointment was made without my input, and that was a good thing because I had no intention of consulting specialist. I thought I was just very depressed…again. A few weeks later, I would have another neurologist at Hahnemann tell me she didn’t think I was depressed at all. It was a time of discovery for me and the neurology department.

H.E. SUSPICION

In fact, upon seeing Dr. K, I told her I was very depressed and seeing her needlessly. She firmly told me, she was the doctor, and quickly shut me up. After I scheduled and had two MRIs, an EEG, and several blood tests, she called and told me I was not losing my mind. She suspected I had HE, a very rare, often misdiagnosed, under-diagnosed, or wrongly dismissed condition that people with hypothyroidism were prone to, and that I would have to spend a few days in the hospital. I cried as I was wont to do, but this time with a sense of relief.

And what a relief. A feeling of calm floated down on me. It was immediate. It was delicious! I suddenly felt that living like I had been for so long was all a mistake; my body had made a mistake. It wasn’t me, my consciousness; it was my physical being! What a wonderful, long overdue revelation. It was, it turned out, only 16 years late!

5 DAYS OFF

Dr. K. said to check in the hospital on Aug. 31, but just 5 days before that I ended up in Hahnemann’s ER. I had been at the gym and my trainer was showing me a new exercise; I had a hard time and only managed a few reps when I got very, very dizzy, even though I was lying down. I stopped and laid still for a few minutes and when my trainer helped me stand, I vomited all over him! He put me in a chair, and got me some water, but my hands were shaking so much I couldn’t hold the bottle. They called my husband and he picked me up and took me to Hahnemann’s ER.

THE FIRST TIME??

The day before I gave birth to my son 16 years ago was the first real episode of Hashimoto’s Encephalitis I experienced; only they did not define it as such. Few medical specialists knew about it then; the neurologist defined it as a pregnancy migraine! My right side of my body had gone numb, and I lost the ability to verbally identify objects placed in front of me. I was in Jefferson at that time, a teaching hospital. So I couldn’t identify that pen, or paper sheet, or paperclip or whatever held up before me numerous times. Not an experience one is likely to forget. The next day, as I was ready to leave the hospital, labor pains began and I had my son that day, September 26, 1995.

Afterward, my primary doctor diagnosed me with hypothydroism, a condition many women develop after pregnancy. I’ve been taking Synthyroid or Levoxyl or Thyroxine every morning since.

AUGUST 2011,
ON THE WAY TO DIAGNOSIS

I was 55 and unemployed for the third time in my career. My most recent lay-off had traumatized me and left me depressed, anxious, frightened, angry, confused, and disoriented. I had spent more than a year in a job that I was fairly sure had originally made me that way, in addition to a family situation that was deteriorating. I felt like I was having a nervous breakdown. So I cried a lot, ate little, and wondered if not living would be preferable to living like I was. But instead of contemplating this question very long, I fortunately ended up in the hospital.

It was the most satisfying experience I had had in years!

And perhaps the most educational. I was diagnosed with Hashimoto’s Encephalitis. I had never heard of it, and at that time, neither had most doctors. Luckily, I had found one specialist who had.

April 2012, NO PLASMAPHERESIS

Insurance won’t pay for it; they say it’s experimental (actually they said no to IVIG, which I had in the hospital previously! Doc said it wouldn’t be any different if she asked for plasmapheresis; don’t understand that. Maybe because they’re both experiemental. Of course, everything is with HE! We need to find a treatment! What now? No more oral steroids!!!

February 22, 2012, PLASMAPHERESIS TO COME

I’m weaning off these darn steroids before my 8 weeks are up. My stomach aches, my weight gain, the knowledge that these pills are eating away my bones and muscles, the headaches when I try not to drink coffee I’m supposed to avoid….there has to be something else. So Doc K says we should try plasmapheresis—remove the plasma, clean it of antibodies, put it back. Don’t know how often this would have to be done, but the side effects aren’t as bad. Still, that means another hospital stay; she’ll make the arrangements.

January 29, 2012, STERIOD SIDE EFFECTS

This is my fifth week on oral steroids…prednisone. My doctor thinks it is worth trying to see if it keeps me regulated…my numbers, that is. So, I’m exercising at the gym 6 days a week; I’m eating less, drinking more water, taking stomach acid pills, and extra calcium daily. And I’m putting on weight. There’s nothing that counteracts the fat-building effects of the steroids, and I know it. This knowledge, however, isn’t enough to keep me from getting more and more upset. The weight may be superficial, but to me, it’s still more aggravating and frustrating than just about anything I’ve had to face so far. Still, I feel better physically. But I know there’s a point coming when that won’t matter to me at all; I’m used to feeling lousy. I hate my clothes not fitting. I haven’t been so heavy since I was pregnant. I don’t think I’ll last the full two months on these pills.

May 16, 2012, HOME AGAIN WITH ‘DR. PAUL’

Today is day 2 of my second bout with home IV steroids--Methylprednisolone (Solu-Medrol) 1 gm in 100 ml this time--from Home Solutions, 1 hr. every 24 hrs. for 3 days. It was arranged by Dr. K. at my April appointment because of the insurance rejection and due to the fact that it seems some of my symptoms are reoccurring. Nothing new, just the same double vision, depression, poor balance again. The sad thing is Dr. K is leaving next month, moving to NY. She’s leaving me with Dr. Carol Lippa who I’ll see in August 2012. (She is a very well known specialist, 30 years in neurology, written some books, quite a reputation in her field. She was the doc that led me thru the Grand Forum at the hospital in 9/2012; so we’ve met.) Still I will miss Dr. K. despite her comparative lack of experience, she did diagnose my case. Hopefully I’ll get something more from Lippa.

LOVE THOSE BRIGHT SPOTS...6/9/12!

The brightest day of the year! I saw Il Divo again, this time at the Mann Center in Philly. Paul went, begrudgingly; he didn't want to me drive alone. There haven't been better voices since TJ!

July 7 2012, SOLUTIONS NOT AVAILABLE                      

This has been a strange few weeks. My father-in-law passed away and a dear friend is about to follow him. All are sad, family and friends. Our minds don’t seem to grasp it all, and then when they appear to, tears follow….it’s a pattern, again and again. There is no solution to death or to dealing with it.

The world on the other hand is still fighting. Now it’s healthcare. Obama, who is trying to solve the problem is getting all kinds of grief; it’s another tax, after all, so few are happy. The idea is to give everyone health insurance by everyone paying. But again, none have a better idea. There seems to be no solution.

On the micro scale, I will have foot surgery this week for joint replacement and be on crutches for a month or more. Our van broke down and now we have only one old car. My disability still has not been approved, and both our health insurance and unemployment benefits will expire at year’s end. Is there a solution here?

It’s scary…for lots of people these days, for lots of reasons. I think it will always be. The world is changing, as it should, I guess. But why in ways that desperately cry for solutions?