Sunday, April 27, 2014

A bit on my Medical Records: Aug/Sept 2000

This is really for my own sake.  As I was going through my medical records last night, it threw me off a little ... how serious is my ILD?  And no doctor has ever addressed the small vessel vasculitis with me.  As you'll see... in 2008 I was diagnosed with Sjogren's also, and a few other "goodies".  This other stuff kind of faded, a bit ... I'll have to see for sure. I was tested for lungs, heart, breathing tests, etc in 2008 or 2009.
So I'm throwing some stuff up here from my records, this page WILL change .... I want it to be more complete.

My biggest health complaints now are depression and other mental issues (confusion, etc)  -  (have had depression symptoms over half my life. Yes, being treated!) and fatigue, and if not fatigue, sleep patterns.
I'm wondering if any of this vasculitis has affected my CNS

(Note to self: see if I've ever been tested for antineutrophil cytoplasmic antibody (ANCA))

 08/23/2000 Chest PA/LAT "Reason: 780.6" is this a diagnosis or symptom? (FEVER)
( My note : may have been starting to check for leukemia)

 09/28/2000 2 results for pre muscle biopsy op? "Chronic interstitial Prominence"
 (My note: I just read this is ILD .. -- until 2008, nobody every tested me for the Jo-1 antibody)

05/20/2010 found on an order for blood - on every test to be ordered
710.4 Polymyositis

Results of Muscle Biopsy - various records
"C3D - a few scattered vessels have fluorescent deposits within their thin walls with C3D. These findings are consistent with a vasculitis. "
Other Muscle Biopsy report
(My note:  be specific about reports)
"Apparent 2B (IIB?) fiber atrophy and a few other scattered fibers are also small. QUESTIONABLE FIBER TYPE GROUPING "
(My note: , also
see Younger Vasculitis article )

More on Muscle Biopsy report:
"Several vessels surrounded by inf.???? cells, with some involvement of vessel walls. UNCERTAIN OF FIBRINOID NECROSIS"
"Cellular Response: Scattered interstitial cellular infiltrates, mainly of mononuclear (small lymphocytes) with plasma cells and occasional eosinophils."
"Interstitial Tissue: Slight to mild increase in endomysial collagen in zones of perifascicular atrophy - on Mason trichrome????"
 "Nerve Twigs: none".
(My note:  YAY)

(My note: fill in missing section here)

"Diagnosis: Skeletal muscle biopsy - right quad: Inflammatory myopathy - of moderate severity - with perifascicular atrophy and small vessel vasculitis."

(note: there is a  Comment under DX as follows)
"The pattern suggests dermatomyositis, with perifasicular atrophy, a change which is more apparent on the parrafin sections then on the frozen sections. This pattern frequently co-exists with small vessel vasculitis".

I'm still around, figuring out my next move.

Hey you out there!!

Wow, it's been a LONG time. I honestly forgot I had this blog.
Unfortunately it's not because I'm well.
 I fell apart at the seams, like Raggedy Ann.  :)

I can't believe that in my last post of 10/2012, I didn't mention I just got up and "resigned" from my job earlier that year.   I did give notice of course. I'm telling you I fell apart.

I'm still unemployed, almost broke, I found insurance because my COBRA ran out, I know I need to find a job, my  mind is a mess and I worry more about my mental health now than physical.
However a friend of mine was doing a paper on PM and Jo-1 antibody and I gave him some information. It prompted me to put all my medical records in order.
Hmmm .... I've been diagnosed with things I really didn't know.

And, I don't have MCTD at all.  Maybe UCTD but to me, that's just become a title for 'overlap'.  I have PM with normal CPK but will always have Jo-1 antibodies however my lungs don't bother me that much. I do tire easily and I'm not sure if it's from my initial diagnosis and all the damage done to my body by the polymyositis, or if it's because of my lungs. In the few years past, I've had many  many tests. My lungs weren't that bad, even though the reports keep saying CHRONIC INTERSTITIAL something or other .. and my heart, is actually well (as of a couple of years ago).   After going through ALL my records putting them in order last night and tonight, I realize I'm missing a few (from even 10 or more years ago, but important ones).

I want to piece this puzzle together.  In 2006 I had to have a cervical polyp removed.  Also my endometrial lining was thick so I had a Dilation and Curettage.  (wasn't pregnant!!!! This was just to remove the excessive lining).  I was looking at the preadmission records, something I probably never did, and all my blood tests were normal!!!!  They of course only took the CBC and metabolic tests, but all were normal. I think I was feeling OK at that time.

VERY shortly thereafter, after the surgery, I felt like poop.  I had a 1 year fatigue episode, and a really bad carpal tunnel episode which was really due to swelling in my wrists.  But I started feeling bad. After that D&C, something did go kind of "strange".  The fluid that I guess they fill your uterus with  (do I have that right?) ... didn't come out at the end of the surgery. I remember the doctor, saying "where'd it go????".  
I normally run a little dehydrated but .... They kept me overnight (I probably wrote this here already, but not in this context) and tried to get me to pee.  Pumping more fluids in me.  I didn't pee alot.
In general I'm not one that has to pee every few hours.

But, ok, back to the subject, what happened to me between approximately June 2006 then 6 months later getting symptoms (which led to a new rheumatologist, another diagnosis of Sjogren's which has serious fatigue symptoms for me, but funny, my mouth is no longer dry. My eyes are, but my mouth isn't.  A naturopath I went to last year said I had alot of mucus (poop test).   How could I have so much mucus and be so dry with Sjogren's?

Maybe I'm just too naive.  Putting my records in order, I'll make little charts (I have some blood charts I used to update to track my blood tests) ..... see what happens.

I do have ADD and associated OCD which is why my posts are so long and either all over the place, or overly hyperfocused (like the one about the lost luggage, LOL).   Just thought I'd put that out there for you readers.  Not sure if anyone will read anyway, but it's OK.......

Hope everyone is OK, I have to catch up. The past few years have not been good for me, and now that I'm practically homeless (not really, have nice condo, but won't be able to afford it soon!) ..... my life will change drastically in one way or another very soon.  I hope to be able to get a job that pays well enough for me to stay here.  It's difficult in my profession when I've been out of the market for almost 2 years!

Thanks for reading!!

Friday, October 26, 2012

Feeling lost and stuck, words of wisdom welcome!

Dear blog and bloggers -
 I'm going to separate details of my life right now into different entries.  . If this blog entry seems vague in parts, it's just so I don't write a novel in one entry. More to come!
  In my last post I complained about going on a cruise, while all of the clothes I packed took another cruise.  (the clothes told me they had a good time, even though they were locked in a closet on the other cruise :)    I overreacted..  At the time I was angry.   A better way to look at it: What's better than sitting around in my condo with a view of other condos?  Being on a cruise with little to wear but having access to lots of fun and great views. 

Rest In Peace, Miss You Much!

Also, in my last crazy entry, I also blogged  about a kitten that I had just had adopted in Oct '11.  After I came back from my luggage-less cruise between Christmas and New Years,  his breathing was strange. I was hoping the vet would say there's a huge hairball or something, couldn't imagine anything fatal.  The vet came back into the "patient" room, with the SADDEST face, she knew I had lost my Mom, and two cats, 18 and 19, in the prior year.  She told me then he has a diagnosis of  a rare feline disease called FIP     I did get a second opinion that gave me hope at first, then the second vet also agreed on the diagnosis of FIP.  "B" the kitten was special; an "old soul" - I used to say "he knows something we humans don't". Sadly, the living brother, my best buddy,  sometimes still waits on the bottom of the stairs for "B" to come down.  I went through the same thing the year before with my 18 and 19 year old cats (lost 3 cats in 1.5 years!)

Enough of that, -- heaviest on my mind now  -- I don't know how to get past where I am at in my life. I've done the therapy thing and need to go back. Hard to find a good one.  . From all I've been through this year, (details later) I recently "collapsed" from all of that,  and now succumb to the low energy levels. And I've aged a few years.  I've had a very tough year and one thing just piled on the other, I felt/feel so alone, my autoimmune disease has taken a back seat.  I went from a frenzied year with little support,  and very little sleep from the period of March through August -  to a life filled with too much sleep, an irresponsible erratic schedule (none, basically) for a 49 year old,  spending many days in my PJs, I procrastinate often (have done so lots since the start of my autoimmune disease). But there are some important things I absolutely need to get done!) ..... I've tried making a list, but then I'll make another the next day, lose track of them,a little OCD I suppose?
Anyone out there have any though provoking quotes or words of wisdom to help me think more positive?

I do have moments that I enjoy.  But far more where I isolate and do not properly care for myself or at least get the motivation to do so.

I'll leave it at that for now.

Sunday, February 19, 2012

The longest post. - pretty off topic

It's been a LONG time hasn't it? So much has happened. In October my 19 year old calico cat, became very ill, she had been diagnosed with kidney disease. Her brother, who passed the year before, (a short while after my Mom passed) .... died of the same thing, however he lasted for about 5 years with it. Anyway, the calico (I'm trying to stay pretty anonymous here, not from everyone, but from anyone like employers who could use my health info against me). was also very lonely, and I knew when she would pass away, I'd be lonely too since I've had these cats since 1992. So I adopted two new kittens and kept them separated from "calico". The calico passed away right after this strange "Halloween" snowstorm we had, the worst snow storm we had this winter (even though it was fall then) ... because it took down branches all over the North East coast and people were without electricity for days, some weeks. I was out from Sunday through Thursday. I believe it was Friday, after my electric went on, I took the calico to the vet, and they tried to rehydrate her. That Saturday night the vet called and said the vet on call witnessed that the calico had a seizure. I knew it was time.

The new kittens now had free reign of the house. I mourned the calico for a LONG time. We became so close after her brother (and my Mom) passed, like we were mourning together. The winter of 2010/2011 was very dark and cold, both weather wise, and within myself.

The new kittens brought joy back into the house. No longer did I have to play "caretaker" .... to any person or cat.

Between Christmas and New Years, I took a cruise to get away from all the stress I'd been feeling, which definitely contributes to my MCTD or whatever it is I have (overlap syndrome, now?, perhaps UCTD? ). I almost wore myself out packing and getting ready for this cruise. I had to shop for clothes, in the winter, where do you get summer clothes? Macy's had a great sale on short sleeved spring-like shirts/blouses. A friend who had just taken a cruise suggested a local thrift shop. Perfect!

Packed carefully, most clothing already on hangers in one of those "wardrobes" .... so when I got there I'd just remove from suitcase and hang clothes up! Was going to leave the night before and stay at a hotel near the cruise ports but I was exhausted from packing, in fact wasn't even done with it. I think I postponed my flight 3 times!! UGH, stupid autoimmune disease.

Anyway, finally flew in and got to the cruise port. Driven by a taxi service. I told him what cruise ship, which port, etc... he said he knew exactly where it was. Dropped me off, got my luggage out of the trunk, there's a Carnival employee right there taking luggage from the curbside. Taxi left, I handed my suitcase over to the Carnival luggage guy .... with a big tag on my 2 bags indicating the name of the ship (provided by Carnival). Walked about a block to the line to "register" ....... spent maybe 30 minutes in line, Carnival employee behind desk says "oh my --- you're on the wrong ship!!". WHAT????????????????????????? wtf
Thought: LUGGAGE! What about my luggage? Immediately these nice people were scrambling to locate my luggage so it can be sent to the correct ship. I helped look. Actually got driven around in a golf cart type vehicle by one of the employees, who took my cell number, assured me it'll be OK, it happens all the time, and after we looked for a while, unsuccessfully (there were thousands of suitcases out, and some inside; where I wasn't allowed to go look)..... told me I should report to MY ship .... he took me there in the little golf cart. same process. Stand in line, blah blah blah. I was in tears most of that time. I didn't trust that it will "be OK".
(this info isn't necessary to the cat story, but it added to all the stress I feel to this day).

Explained to many Carnival employees the story. NOBODY told me to immediately report this to guest services, which I didn't even know existed, once I was ON my ship. Went to my room, I upgraded to a room with a balcony. Nobody had their luggage yet anyway, because they were still loading it from the docks. Probably around 2:45 or so at this time, Somehow I finally got down to guest services, and the woman actually raised her voice at me for not telling them sooner. I told them that the staff from the OTHER ship were VERY helpful and I spent the last hour THERE .... not "HERE". She blamed ME for the mistake. honestly, yes, I put my luggage down in front of the wrong ship, but that's where I was instructed to put it, I didn't know I was at the wrong ship. Not sure how many of you have taken Carnival cruises, but there's no huge sign saying the ship's name during registration. (these are buildings that connect to the ship, like a plane connects to the airport). I was getting very nervous, ship (both ships, actually) departing at 4PM. Went to room. Unpacked my carry on. Jewelry, camera, iphone, magazine, pen, paper, passport and other ID, money, learned how to use the safe, took a drink from the fridge even though I knew it would be $$$$$$$$$$$$$$$$$$$$$ (actually no more than at the bars there). Told my steward my woes, he also assured me they will find it.
GOT A CALL FROM staff from other ship who took me on that golf cart ride. :) He found ONE of the bags. The bag with all of my shoes. OK .. the other one HAS to be nearby. Now that he called me, ha, I have HIS cell number too. ..... people on my hall were starting to get there luggage, not all though. GOT ANOTHER CALL from woman at "Guest Services". "GOOD NEWS, they found both bags, they are on their way, the ship will NOT leave without them". Celebrated with sign outside my door for steward to see. Steward said that once they KNOW where the bags are they are obligated to get them to the ship if it hadn't departed yet. It was about 3:30 now. At ease, I spent some time on my balcony, overlooking Miami. Now it was nearing 4, then past 4. Ship hasn't moved. Hmmm ..maybe my steward is right, maybe they are rushing my bag and others over ...... (how selfish of a though, to hold 3000 passengers up for MY luggage).
WAIT! Look! PINK BAG WITH SHOES SHOWS UP AT DOOR!!!! awesome. Now I KNEW my luggage made it. I took a nap, not caring if I missed the party on the deck when the ship deported (deported, departed, drove off, whatever!). Ship had departed/ported. Woke up 1/2 hour later, called Guest Services, told them I had pink bag. not the big huge red one with all of my clothes. She said that luggage isn't guaranteed to be delivered to rooms until 8PM because of so many "guests". Ok, I totally trusted her.
Unpacked my shoes. ha.
My possessions at this point: everything I had in my carry on above, what I was wearing (white shorts, sleeveless top (white or black, I forgot), black light summery sweater I wore on plane also, white pants I wore on plane (I changed when I got to Miami and put change of clothes in carry on). And a BUNCH of sandals, shoes, one pr sneakers, one pair socks (tucked inside sneakers I think). What else? I have a picture somewhere .... maybe one extra shirt, and for some strange reason, I had pajama bottoms in my carryon. (I did some rearranging of suitcases/carryon after I landed in Miami, too early to go to port). Um, no extra underwear. No bathing suit.

Went back to my nap. Guest Services calls about an hour later. "Mssssssssssssss ... ................... I'm sor ..........." I didn't hear anything else. Sor means sorry. Sorry means my other bag isn't on THIS ship. I lost it. Totally. This was my ONE vacation in YEARS ... after death of Mom, 2 cats, stress of selling house I grew up in, stress of autoimmune disease, short term disability, depression problems.
I screamed, cried, swore, I was very mean. Credit to them though, they are used to it and didn't scream back. Hung up on her!!!!
Then later went down to desk. She still blamed me. Again, made a scene, cried, swore. (Most people that go to Guest Services have a problem to begin with, so .... ). I said "I handed my luggage to a CARNIVAL employee who didn't notice that the HUGE tag on my luggage that said "SHIP A" while I was really at "SHIP B" and there MUST be other checkpoints after that.... she said "it's not their responsibility to check the tags". The woman gave me a FREE TSHIRT to sleep in. Gee thanks. After more crying, and complaining loudly about HORRIBLE customer service -- she suddenly decided to give me a $400 credit on my Carnival account.
OK, now I know from others, that when people's luggage doesn't come with them on the ship, it can be sent to the first port of call. I asked. She checked. NO. Can't. WHAT? The other ship and ours didn't cross paths. SO WHAT? Could you NOT take my luggage off that other ship at their first port of call, and fed ex it to our first or even second port of call?
"NO". I screamed more about horrible customer service. (not really screamed, but made a scene).
Eventually I filled out a report. She filled out half and got everything wrong. She said I did not buy trip insurance offered by Carnival. Oh, but yes, I DID.

With $400 credit on my carnival "card" I immediately went to stores on ship. Um, they don't sell shorts, bathing suits or underwear. They don't even sell normal clothes for a woman my age. I bought a couple of dresses for dress up night with the captain, and a couple of casual dresses one of which was really a bathing suit coverup but could pass for a day time dress.
By end of cruise I returned two of the dresses.

Went to bar closest to Guest Services. Told them my woes. They gave me extra rum in my pina coladas for free. :)

So I went through the entire cruise without all the clothes I bought, carefully packed, etc, while my big red bag took another cruise altogether. Not trusting I'd ever see all of the summer clothes I now own again.

The cruise left on 12/24 and the 2 FULL days (25/26) were AT SEA. No bathing suit. Washed my own underwear every night (TMI, maybe but I bet you were wondering). Didn't go to the captain's dinner even tho I had dress. Wasn't really enjoying myself ... pissed.

On the 27th 28th and 29th we went to three different islands. At the first two islands - I shopped. At department stores. I didn't go ziplining or visit the beach or take a tour. I went to stores that the natives would go to .. to buy underwear, bathing suit and maybe some shorts and tops. (The $400 credit was only good for the stores ON the ship, it wasn't cash. It was credit to my Carnival account). So these clothes, I paid for. Third island I actually went snorkeling. Boat crew was great. On the way back we drank rum punch. Strong.

Couldn't wait to get home and see kittens. Ship back at Miami, that was also stressful day.
I was told by two different people and a letter, to get up earlier than everyone, be the first off the ship, and I would be "escorted" to my luggage before everyone else's luggage was out. What actually happened: I got up early, went to Guest Services as instructed, woman knew nothing about being escorted, had to wait, meanwhile, watched a whole bunch of people get off the ship before me. Which means, the luggage was out. Which means, mine wasn't. Was "escorted" to someone who told me that now, I had to wait 2 hours until the ship was cleared of all passengers until I got my luggage, which was locked up in some secret room. ...Geez.
My problem was handed off to many different Carnival employees and the translation of the entire thing got lost.
Finally .... luggage came to me.
Now, I paid for transport by Carnival from port to airport, but it had all left. I INSISTED I am NOT paying for my transport. I paid already and had been through enough hell.

I ended up on a huge bus, the only passenger. LOL
Got to airport. My luggage even took a friggin' different flight than I did! But I did get it.

Picked up cats next day. Cats are strange sometimes when put in different environments, etc. ... but one wasn't breathing right. Figured anxiety. Waited a few days, then took him to vet. HOLY CRAP cat has death sentence, diagnosed with FIP.
Bring it on, G*d. I guess you think I can handle all of this.

With vets help kitten led a quality life for weeks. However I had to put my kitten down last Saturday Feb 11.

Well to top it all off, work has sucked. My boss decided that I'm not worthy of the good work I used to do and put me on documentation. Then she started treating me like I didn't exist. I went to HER boss to talk about it. She got wind of that and in retaliation, I'm sure, SHE REPORTED ME to HR ! For attendance problems, (yes, I admit, January was BAD. MCTD, stress, dying cat, ). and to top it all off, not only did she report me for attendance, she reported me for PERFORMANCE. On these stupid documents. She couldn't find them (she was in class or training or something most of January) .... so therefore I wasn't performing. WHAT? We took a walk outside of our work building to talk about it. I lost it a few times. I couldn't believe she reported me for performance. On documentation! I told a trusted friend about this and he said "they better watch it they could be in for a lawsuit" because I was out on Short Term Disability from late August until 12/1.

Turns out, 2 weeks ago, she called a meeting for her staff and told us she was LEAVING the company.... I could hardly contain my joy.
She's gone now. But now I have no manager, no director and now work. So I'm a bit worried. Meeting with upper management on Tuesday to discuss fate of us (her former staff).

That's all. Sorry to bore. Just bitching!

Sunday, October 9, 2011

Scared - hypocondriac or being my own advocate?

I'm scared for my health.  I'm scared of all of the meds I'm taking prednisone,antidepressants/anti anxiety/stimulant (for fatigue)., and supplements like fish oil and Vitamin D, and  thyroid .. some others as needed).
 I felt like SHIT yesterday (10/8).  Worse than in a long time. Trying to keep a food/med/"how do I feel" journal ... I need to remember to keep it up to date.  I just started taking this new supplement called NAC or  N-Acetylcysteine.  I got the idea from this clinical trial .
I mentioned this to my brand new, young cute pulmonologist  and he told me to hold off .... ugh.  I haven't heard any bad things about it yet. But since I'm feeling shitty, maybe I should stop.
I also noticed my neck glands hurt today, are swollen more than usual.  I never get sick, but with the prednisone, I know my immune system is suppressed so maybe I am just getting plain sick.  I slept until 3PM yesterday!  
Monday I have a follow up with the nephrologist who I'm sure is going to tell me my GFR is still too low.  She retook the test but I'm sure it's still off.  I had especially high blood pressure that day.
When I saw the pulmonologist my blood pressure was better.  Normally, it is on the lower side of normal however, I take adderall and that could be why. On the other hand she mentioned something about blood pressure in the lungs.
I really need a doctor to go over all my medications. I have three red flags when I check the interactions. The doctors see that too. I see it on their screen.  I've been taking antidepressants for 25 years. Nobody ever checked my kidney counts during that time.  Also, I get palpitations. I thought it was the timing of taking the adderall or sometimes just plain anxiety.  But I read something today that a woman was misdiagnosed for 6 years with depression and anxiety when what she really had was a pulmonary embolism.
I'm so confused.  Am I being a hypochondriac, or am I just looking out for my own health, since MCTD is so complicated?

Friday, September 30, 2011

blood results

Many vials of blood taken. Only including abnormal results below

Eosinophils .2!!!! Is that from taking prednisone?
Creatinine 1.3 (known issue, seeing nephrologist today)
GFR - really low. Probably get another "take home 24 hour pee test".

What's really strange, SED rate is normal. That's insane. Maybe the pred again?

ANA Screen With Reflex to IFA Titre
Positive, A

CK or CPK not taken, as crazy as it sounds, since I've been re-diagnosed from PM to MCTD, my muscle enzymes have been normal but the JO1 Antibody is out of control.

ANTI-JO-1 Positive, 3.9
SCL-70 AB,EIA Positive, 1.0, A
SSA >8.0 Positive, A
SSB <1.0 Negative

LOW VITAMIN D!!! Supplementing!

ANA Titer & Pattern
Anti Nuclear AB Titre 1:40 High (it's been MUCH higher than this before)
Pattern: Nucleolar (A)

Thursday, September 22, 2011

My current rheumatologist

Tomorrow I have an appointment with my rheumy. I just received a letter in the mail that effective Dec 3, he is retiring!
This is GOOD for me because I wanted to find a new one anyway. Now I am free to ask him tomorrow how to get an appointment with someone in one of the top hospitals for rheumatology

Wednesday, September 21, 2011

Acetyl Cysteine (NAC)

Has anyone heard of Acetyl Cysteine (NAC)? I came across it when I was searching for Clinical Trials and found a trial that uses this supplement for Interstitial Lung Disease (ILD). I ordered some from Amazon, and the supplement has seemingly raving reviews (mostly for Bronchitis).

Wikipedia NAC
See "index" on page for ILD, etc.

A promising Amazon review. You never know ....

In search of best doctors for Sjogren's, MCTD

Found some good links for starters: 
US News Best Hospitals
Johns Hopkins Division of Rheumatology

Can any readers give me advice on how to get an appointment with a top Rheumy?

Found one .... crap, how to get an appointment with a Physician-in-Chief Emeritus
More on this doc ....