Tag Archive | diagnosis

So much… (Part II)

Dec30

Party in the hospital room :)

So, this will be a mini-update, and after the new year, I think I will write a comprehensive overview of what I’ve gone through the past month or so- perhaps a series of updates on each topic. *Remind me to write a post on how being in a wheelchair does not make me any different from most anyone else. I’ve just gone through a hell of a lot more- most likely. So please don’t feel sorry for me.*

Anyways, so my dear family friend Bob came to my rescue at the hospital. A few days later in the hospital, my parents returned from vacation.  Lots of doctors came in and out, and I had several scans, MRI’s etc. No one could figure out what was wrong. It seemed disappointing that because the doctors could not find anything at that time, they almost seemed to discount me. However, I (<–very capital ‘I’) was still the one in very much pain, and had no use of my entire right leg.  It went on like this for the entire week I was hospitalized.

Honestly, the only positive that came out of the stay was how much I could see everyone cares about me. In addition to the well wishes from my friends and family online and via telephone. I had lots of visitors. All at once! It was a giant coincidence, but one of the days, I had a room FULL of visitors. Within about thirty minutes, in addition to my parents, my ex-boyfriend’s parents (whom I am still close with and honored to have them in my life) showed up expectedly, then one of my best friends (Stephanie) and her mom came to visit, and then my hairdresser of almost a decade all came in at once. It was overwhelming and wonderful.

Other than that, I’m sorry that I can’t give you a diagnostic update. One possible diagnosis, is ‘Conversion’ syndrome. I’m not a fan of the diagnosis… being psychiatric. Essentially it is like PTSD. Another possibility is RSD, a neurological nerve disease. Neither are great options for me, but nothing really is at this point. I will try to give updates as they come, as each doctor’s visit occurs, etc. So far, I’ve seen a neurologist, who I will see twice more in January,  a Psychiatrist, and am attending regular Physical Therapy- with a Neurology specializing Physical Therapist. I have an appointment scheduled in February with the Pain Management Clinic.

For now, my leg is still painful, I am on way too much medication, and am restricted to a wheelchair.  Hopefully we will figure something out.

Thats the key right now- the hardest part for me is HOPE. Having gone through this last year, I feel like everything I am going through is just reliving it. It’s like watching a horrible movie over and over again. You don’t like it, you don’t want to see it, but you are forced to see each and every scene. It’s hard to explain, but that in and of itself is making this time around a lot harder. So… I am trying to keep my chin up.

——-

Other than that, I will definitely keep you updated. One update- I have finally received the gift from lupus of joint pain. Some days, every one of my joints from my knees to the knuckles in my pinky fingers, it just hurts- bad. Surprisingly Aleve is pretty helpful.

Talk to you soon…

XoXo Becca     *Happy New Year*

Lupus really sucks.

Feb11

 

***I will add fun and exciting pictures, videos, and tags when I Get home this afternoon. Hopefully this should keep you entertained for now :)

Ok, So I don’t like the way blogs are so restrictive. I want to make a website. I have too much too talk about and hate jumbling it all into ONE page in a blog. It’s confusing and overwhelming. I’m going to do this regular kind of blog once more at least, and then see if I can figure out how to make a real, dynamic, simple, pretty WEB PAGE :) !!! I am going to try WEEBLY. Anyone know much? It seems like my best option. For exapmple, I want a recipes page, and I want a lupus vs exercise part, and I want a random other life event page… and I feel too restricted here!

Back to the LUPUS discusiion: I was in the hospital again for a lupus flare (stay #3 — Jan 26 through Feb 1). I think it was a week. This time  I stayed on the ‘Women’s floor.’    I asked them if there was a particular reason, and they said because I was a woman. Fair enough. As long as they didn’t think I was having any children. I know the steroids have done their part and all,  but gosh. :) haha

No, no  thing too productive happened during my stay, other than a LOT of tests, medications, exams, screenings, and three more treatments of plasmapheresis. I saw Dr. Huppert every day except Sat/Sun, where he sent ‘Chief of Medicine’ to check in on me and evaluate. So0o0o…

Why was I admitted??

Thursday night, I’m at the hairdresser, getting my hair highlighted (foiled) and I get a phone call FROM my Rheumatologist asking me if I could head to the hospital then to be admitted (@ like 5:30pm!). Apparently my mom had sent him an email, totally appropriate, saying how I had been swelling up very badly, getting excessively red rash-y and my lungs were hurting/I had a bit of shortness of breath.
My response to him was something to the effect of I had 50 pieces of aluminum foil sticking out of my head and could not be at the hospital until at least 7pm. He didn’t say a lot… just that he’d put in orders for me to have a bed ready there tonight and he’d see me first thing in the morning.

Here’s my stats upon intake:  99.4 temperature,  high blood pressure 144/101, slightly high pulse 118, and a pretty high pain level in the back of my hip and down my right leg.

They gave me my normal dosage of evening medicines in addition to a meager 2mg IV morphine.  (In case I haven’t mentioned, I have a ridiculously high tolerance to IV narcotics, and it makes me very angry and almost isn’t worth the frustration of bothering with dosages.) Oh, and I got an injection Salumedrol (more steroids).

Throughout the week, we discovered I was in fact in a ‘lupus flare’- not in remission YET. I had high ANA’s, low potassium, low WBC, etc.  I got another perma-cath installed (surgically) which was an absolutely awful experience. If I ever see that anesthesiologist again, I’d love to shove a huge tube through his chest wall into his heart while he’s awake and in pain. Then tell him it’s ok he won’t remember. WELL I remember. JERK. I told him I needed more medicine, but no no no- the person having the surgery (who has in fact had it before….) doesn’t know her body at ALL.     So I guess to shut me up, in the recovery room they gave me something to knock me out for about 4 hours. Yeah doc, thanks for the help. You’re fired in my book- wait until I get my medical records. You are going on my blacklist!

Anyways, throughout the stay- I was given three infusions of 1000mg Salumedrol steroids to try to control the lupus flare. I was given respiratory therapy (nebulizer treatments and advair a few times a day).

For the Transverse Myelitis (triggered by the flare) I recieved 3 treatments of plasmapheresis. But my FIBRENOGEN levels were too low (in the 70′s rather than the normal 200-300) so they spread the treatments out over about a week. My levels only had to get to 100 for them to do it, but it took a few days for me to get there. The third pheresis  that I got ended up being outpatient- they released me and let me come back two days later when my fibrenogens were alright. LUCKILY….they were 101! Woohoo, I beat the 100 mark.

I ended up doing the 3rd plasmapheresis ‘outpatient’ on Friday, so I couldn’t get my perma-cath port removed until Monday  in the surgeon’s  office. Too bad that plan didn’t work out.

The EMERGENCY Room Visit….

So, I’m getting ready Saturday morning, doing my hair, almost totally ready… and I go to put on my shirt and my port starts bleeding out through my tagaderm. Like, leaking out….by Monday I’d be toast.  So, Plan A- go get nails done with mom and paint pottery. Cancelled. Plan B- Why not go hang out at the hospital??? I mean, I’m starting to get recognized on a first name basis- in a Center City Philadelphia hospital. No big deal.

So, really they just have to make sure it’s sterile, pull in a surgeon, and he can pull out the catheter. Ohh… I got a video for you guys :) If your squirmish, maybe my mom talking about my grandmother being scalped the entire time will calm you down :)

That went really well. The doctor patched it up with some gause, gave me the standard keep it clean and dry speech, and said if it leaks too much to come back to the ER, but it might ooze a little. All done….. so I get up, get my pants on, my KAFO leg brace, move on to my bra- and all of a sudden my bandage area (top of right breast wall) became very warm. I looked down, and turned to my mom. I’m pretty sure I was concerned about getting my new bra OFF because my body was literally spilling blood. The blood started ballooning out the tegaderm  (clear bandage) over the gause. Eventually (which was all in probably 3 or 4 secs) I opened the curtain expecting the doctor to still be out there, and said “Uh- I think it’s a little more than oozing…. DOCTOR”

Some other doctor (student?) rushed in and was freaking out trying to control the bleeding. He didn’t know who I was and was apparently trying to discharge another patient, but he was nice and came in and applied pressure to my gushing wound. Ooops, emergency. Haha, nothing ever seems to go right for me. Turns out, my surgeon who pulled out the tube had already made his way somewhere else in the hospital. So 10-15 minutes later the surgeon comes back  in, maybe 2 minutes after the student doctor left and asked my mom to apply full pressure on the gause pads on my chest so he could go try to find a doctor. The surgeon said applying pressure to the wound just holds the blood in…. that that wasn’t helping anything. I was bleeding out of my JUGULAR…

So after 20 minutes of pressure on my jugular by the surgeon, it still bled. Then the surgeon told us to apply heavy  pressure there for 15 more minutes, patch it up, wait 15 more minutes, and then see if it bled. Finally I was in the clear and got to leave!!!

About Lupus sucking- I’m not even going to start with the stretch marks. That’s another story for another night…. but I’m telling it because gosh darnit, it is NOT cool… I am going to try to see a nutritionist. Because if I don’t get off these steroids soon, I am going to lose it- mentally….certainly not physically. Anything that goes into my body seems to stay in pounds.

Physical Therapy

So, being in the hospital, I had already been ‘off’ physical therapy for about a week and a half. Which is a bummer, because I like my 3x week of therapy. Makes me feel like I am aiding in my own recovery. I go in Monday, not feeling 100% , and she told me I should be discharged for a few weeks :( Then come back. No way! I told her how abotu I come see her next week. So I will go back to her Wednesday, after I see Dr. Huppert (my rhuemy) on Monday.

Oh, I also don’t think I wrote anything about my hospital roomie Judy coming to visit!  That all happened before the hospital visit luckily! Hopefully we get to visit again soon, and relax!

Big Stuff Happening!

Jan17

I’ve had a pretty busy couple of weeks. I think I had something like 9 doctors’ appointments in 5 days, not including Physical Therapy!

♥ Doctor Visits ♥

Primary Care Physician- who seemed to be a bitoverwhelmed by my massive amount of ‘history.’

She recommended I see a Psychiatrist once or twice, to check in with my medications and that I’m dealing with all these life changes alright— which I saw him today– I am! I passed the psych test I guess, he was a nice guy. Graduated OVER 50 years ago, so he really knows what he’s doing.  I also saw my favorite (closest human comparison I could make of him is to Einstein- with maintained hair).

Neurologist- productive, scheduled 3x more plasmapheresis treatments scheduled 1x month until April. Hopefully that will kick all those evil auto-immune antibodies out of me!


Dentist-if that counts, which it does, because I was there from 11-5.

 [Long story short--- I had previous corrective upper jaw surgery, which as a side effect, cracked my vampire tooth root (inscissor?) and the one next to it, closer to the center, so I had to get them fixed big time.
♦◊♦  My actual pretty teeth sample -->   
But that is just temporary to see if my bite is aligned properly with the new sizing of the teeth.
Final draft=Valentines Day. Joy.
---------
And of course my favorite, Dr. Huppert- my Rheumatologist.

I went in for what I guess I was a scheduled 'check up' /how's your lupus/ hows your paralyzed leg working out appointment. It went so well. He is a jack of all trades I swear. I mentioned to him my knee had been sore on my 'hurt' leg, and he says "Well yes, there's f

luid in it Rebecca." So he pulled out a big turkey baster needle, swabbed it with some iodine, and jammed it in my knee a few inches.

 It really wasn't that bad. I was amazed he was pulling synnovial fluid out of my knee, massaging the fluid out into the syringe a bit. I believe he said it was 5cc's (or mL's?) which was significant, but he's seen way worse. Heck, I didn't even know it was in there to take out so I'm good with a drop coming out- because my knee doesn't hurt anymore!!! (for now). I guess it is arthritis- but not the old age type, the lupus type.

SO Yeah, I definitely wasn't expecting that today...but it was awesome. He said normally you want less than like LESS that 0.1 cc's in there, so it definitely wanted out.   (End result--> little bandaid -->swelling gone, and no pain!) Wow. The things this man pulls out of his 'hat'....he's amazing. I wonder what I'll get next time! Hehe.

AND!!!!  HE decreased my prednisone steroids another 10mg down to 40mg!!!!   That will be officially HALF of what I started at!!Woohoo- GOODBYE chipmunk face.   (Here's a pic tonight--MILD malar rash ("BUTTERFLY RASH"), in case people want to see symptoms. This is the minimum it ever appears, I can't even feel it at this level. One day I'll try to grab a comparison ''severe picture" just for those of you who are interested in seeing it.)


Physical Therapy. So, other than all those doctors, I got my KAFO Hydraulic $9000 [of insurance money :) ] brace back again today from the hydraulics screw cracking over the weekend. They fixed the screw but need to order a new hydraulic system for it so I will have to give it back to the Custom Orthotics man- Mike, once more at the end of the week :(  BUT THEN it should be fixed for good, and I’m going to be running like Forrest Gump in no time!!! (without the breaking the brace, and much pinker).—–

It also happen to have re-acquired my bronchitis [ Supposedly I gave my parents the virus while I was sick---> they suffered through it a few days ---> then I got it back I guess.] Being so immuno-compromised with the chemotherapy, prednisone steroids, etc  I guess this sick-er thing is to be expected. But  I managed to avoid being admitted to the the hospital this time, other than the x-rays Dr. Huppert had me magically admitted and xrayed on MLK day at 5pm in the Hospital across the street- which turned out well- no pnuemonia. I am just back on another run of bactrum antibiotics… and IF HE LETS ME/thinks I’m well enough, I will be allowed to get my chemotherapy on Thursday morning. He really had a problem with my cough. But my lungs are just loud and seal-bark sounding I guess. Sorry :/

————–

  • I also want to start expanding my blog- if that’s even possible. I would like to add a section for:
    • Recipes and Cooking with Lupus
    • Lupus facts/awareness <– You know, the things they don’t tell you in the books. In short sentences.
    • An awareness group??

Perhaps I can make pages…? (Like different sections of my blog?- gosh I’m so new at this! Teach me!

  • ANND I read a blog where a girl did something called ’30 days of Truth List’ where each day was a different question/topic.  (credit: http://hope.gr/30-days-of-truth)  I thought it was an interesting continual read each day, and could provide a lot of introspection. SOO I’m going to do that. Maybe starting tomorrow, since I just noticed it is 4am….I need to pretend to sleep and then maybe I really will!!!—————

But before I go, while I’m on randomness, two things….

1) I want to start my own (possibly join) a Lupus Awareness Group to get the word out there. I really want to be active and involved. People just don’t know enough about it. And the more info about it out there, the more research that can be done, and the more about the disease can be understood. So if anyone has any ideas about starting some sort of foundation  or non-profit? or just some other kind of group. I supposed I’d design a website, a logo, and tshirts, and information, as well as an open forum.
♦♦♦ Sounds like- and will be a lot of work- so anyone with any ideas or suggestions- please THROW them at me! :)  ♦♦♦

2) Completely random side note—I just started drinking this Body By Vi shake (powder drink mixed with milk, or substitute in one of those shakey blender bottles) which literally tastes like cake and it gives you basically all the nutrients you ever need (from foods) if you have a hard time eating healthy enough (like me) and I am in LOVE with the shakes. So much so I’m considering selling them. It’s one of those pyramid things, but it’s not a scheme… so I’m actually considering it. Otherwise I highly recommend you try it!!! OMG It’s amazing. I will do a post about it in a day or two, like a little advertisement I suppose. It’s amazing, seriously.   You WILL be hearing more about it soon!!!!!

February is going to be a big month for me. I feel lots of productivity coming on. It’ll take work, but come on- work is good for you!!!!

Have a great night/day/morning everyone!!!

XoXo Becca♥boo

Hospitals may suck, but at least they make you feel better!!!

Jan5

♥  2nd Lupus Hospital Stay – 5 days  (December 30th-January 3rd)  ♥ 

So, I probably did too much going out to Hershey’s Park and all the shopping around the city (outside)…. but I ended up with bronchitis. And so I went to the ER (because there are NO Urgent Care clinics in Philly) Friday the 29th, to make a quick stop for antibiotics, Xray, etc. They told me my Xray was good, I had bronchitis (not to mention a cough that sounded like a SEAL).  They ended up giving me a nebulizer breathing treatment, and a prescription for antibiotics and an inhaler.

The next day I felt a hundred times worse and since I had family in town, after Physical Therapy, I snuck a quick appointment into my primary care’s office.  They snuck me right on in direct admittance to the hospital….. I practically had a room and a bed ready for me before I crossed the street to get there. So that was fun. I had a nice view of city hall out my window, and NO roommate!

Once they saw me (and heard my SEAL COUGH)  they started me on 3 IV Antibiotics (Azithromycin, Vancomyacin, and Zosyn– in case anyone cares to know which) and pulled me off the Bactrum Antibioitic the ER had given me the day before. They also started me on nebulizer treatments every 4 or 5 hours, which was later changed to every 8 hours when they put me on a 24 hour masked 50% Oxygen cool mist humidifier. That was pretty much it the whole time I was there. Vital signs, pills for lung pain and coughing, other pills, respiratory therapist visits. The end. No, just kidding.Luckily I had given my sister and her family a big hug goodbye, because they were heading back home to sunny Florida that afternoon.  Anyways, I had a room and a bed on the Med/Surg floor really quickly, but I don’t think I saw a doctor or my nurse for probably 3 or 4 hours. Strange.

Other than my bronchitis, they were concerned about two things. 1) A possible blood clot in my lower right calf- which had been super painfully cramped for a few days — that turned out fine, after a 3 hour ultrasound and all. But they told me to watch it, because it was a little swollen and I had tiny leg veins for clots to hide in. And apparently lupus gives you a higher for chance for blood clots.   2) My ‘abscess‘ thing on my stomach.  It started out as a little white dot surrounded by a red circle like the size of a ‘big’ quarter, surrounded by a white circle. However by the time I was actually in the hospital it was a small black hole, surrounded by red skin, probably the size of  a large tablespoon spoon. [Check out the photo on the left] And some of  the parts in the ‘red zone’ were rock hard. Oh AND IT HURT LIKE THE DICKENS! The weird part was if you pressed on the side of my stomach, or way below the spot on my stomach, it still made me literally scream in pain–at the location of the red spot.

An infectious disease doctor came in, and touched it and stuff, and told me he thought it was a PHLEGMON. I asked if he could spell that, and he DREW me a picture!

So, here’s a picture of my re-draw that explains it a bit—>

But basically instead of an abscess or pocket of pus/infection  under my skin, most likely from an infected hair follicle, I just had infected tissue. Like, the fat skin, whatever tissues it touched were infected. But don’t worry, the surgeon came in my room all by himself with his kit, sliced me open and pulled it right out!!! Part of it had actually become necrotic [DEAD]. Fun, that’s probably why I had a fever.
[♦◊♦ WARNING - - - if you get grossed out easy, you might want to stop reading- and then I'm going to show you a picture of the incision- so stop reading here maybe? But really..... don't! It's not that bad. AND this IS a lupus blog ♦◊♦ ]

I got to watch the whole thing, thanks to local anesthesia. It was crazy- he cut it open, maybe an inch wide, but he went deep. INCHES deep. .  He cleaned it up and then reached in with his clamps and PULLED out gross, infected, interesting stuff. Not too much, but enough. It was rather amazing how he dug around in there so grotesquely His scissors were the clampy kind and he essentially reached in the hole he cut, and did this circle type thing feeling around in there under all the red stuff to make sure there was no more. And in the end it looked like a small stab wound,  next to the ‘folliculitis’ spot that originated the infection. Then he didn’t stitch it or anything because he said it needs to drain and heal from the inside out- wouldn’t want to keep any more infection in there! So he bandaged it up with a simple piece of gauze.
That was pretty much the most exciting part of my stay. Oh, and New Years Eve!!! LUCKILY, I was awoken to have my blood drawn at 11:55 pm, so I turned on the hospital tv really quick and watched. I even took a picture. I heard one or two fireworks, but being in center city, surrounded by huge buildings made it kind of hard to hear (or see) the show in South Philly.
I didn’t actually get my mini-surgery on my stomach until the next day, January 1 2012. Then after they determined I didn’t have the flu, my fever went down, and my blood cultures were alright, they let me go home late in the day on Tuesday the 3rd!!!!  They told me the blood work indicated I am NOT in a “lupus flare”! (Good news- however, this makes me realize how much I still don’t know about the technicalities of lupus- such as when you are in a flare, or remission, or just normal? )
The docs released me basically saying I just need to be careful with my skin and airways in general.  They wrote me prescriptions for Bactrum (antibiotic) 2 at a time, twice a day, 5 days. And, morphine pills. Only 14 pills, but I’m pretty sure my lungs and/or won’t hurt enough to need more. Hahaa.
Here is my ‘owwie’ now, looking pretty good. Smaller in size. I put a size comparison pencil for fun :)  I will make the two photos thumbnails in case you get grossed out. You can click them if you’d like to see bigger!!

——–

New Symptom?

On a separate note, I have a little  bad news. It’s a new symptom that started in the hospital. I didn’t think anything of it, it was maybe the last day or two I was in there that it started.  My right forefinger and thumb- at the very tip have sensation loss. It’s almost like I burned them, or shocked them or who knows. Or, it feels like I have superglue on the tips! [Really the tips, like you have to lift your hand and point your fingers directly downwards onto the table to feel the part I'm talking about.] I tried to ignore it, figuring it would go away, but now I have slight sensation loss in the tips of the rest of my fingers– on both hands. It’s most severe still on the first two. I called my rheumatologist and he said he’d like to see me tomorrow (even though I have an appointment in 10 days). So we will see how that goes.   I get to use my KAFO leg brace tomorrow again at physical therapy… I’m hoping I get to bring it home!!!!
That’s all for now.

XoXo BeccaBoo

“The more light you allow within you, the brighter the world you live in will be.” ~Shakti Gawain

Productivity and Progress!!!

Dec17

Today I went to the Physical Therapist (as usual- Mon, Wed, Friday until March 2012i) and the ‘Orthotist‘  came by I got fit/casted for a leg brace that should enable me to WALK!!!

Check it out, he actually made a cast of my leg –>

Since I have fair control over my hip joint, the ‘brace’ (which will be molded to my thigh and calf areas)  will have hydraulics at the knee joint allowing me to bend my knee up to 30 degrees and then lock, simulating or initiating walking.  I think it will also have metal bars that run down both sides of my legs in addition the the hydraulic knee.

It will take a week to make- AFTER insurance processes it that is, so I don’t know when I will actually be getting it. However, I did get to pick out the color!!! And it will be a very pretty soft pink colored plastic. Its called a KAFO brace.

 I believe it will look something like this->
(but instead of all the grayish stuff it will be pink- maybe?)

So, that was an unexpected but super-exciting visit, because I wasn’t expecting to get fitted for that until next week!!

THEN, I had an appointment with my rheumatologist.  He is an AMAZAING doctor, and a very very busy man, and if he weren’t who he were I don’t know how I would have dealt with today. Haha- let me explain. My appointment was at 2:15pm. I left his office at 6:15pm. Now don’t let the wait give you the wrong impression- he gives meaning to the phrase “Worth the wait”… but today was a little excessive. Anywhoo, I’m certainly not complaining. I learned a lot. I got a cortisone shot in my hip! to hopefully remove some of the chronic pain. We are hoping the pain is ‘bursitis‘ secondary to the inflammation of my joints, etc. My hip still hurts, but I’m definitely going to give it some time and see how it works.

So, here is what I found out today:   (I apologize in advance if it gets confusing or repetitive and for the big medical words)

I learned (from the rheumatologist telling his intern of the day) that I have a very rare symptom of SLE lupus- in which you may see 1-3 cases per 1000 patients. Apparently lupus can most severely affect two main organs: the kidneys or the brain/spinal cord. Mine chose the CNS (brain/spinal cord). Apparently I have an immense amount of inflammation [Transverse Myelitis] in my spinal cord, specifically at the L1 level- where the lesion is located. According to the doctor, “only a handful of patients have Vasculitis with Systemic Lupus Erythematosus” (SLE). ….and I do.   

SO the rare  part of it, is associated with my hyperreflexia (basically overactive reflexes-aka if you do the hammer test on my knee I will probably kick you…hard).  I have this hyperreflexia due to the tranverse myeltis (inflamation of my spinal cord).  And according to the doctor, in general, the people with myelopothy who “survive“  (which I am hoping means recover) are the people who receive CYTOXIN. Which is the chemotherapy drug I got in the hospital! (Good news for me).

I will be scheduled to have the Cytoxin Chemotherapy Infusion for 6 more cycles, starting next week.  :) !!! Now, don’t get me wrong… I’m NOT excited to have to go through 7 cycles of chemotherapy- it’s a very aggressive treatment for lupus- but I am excited that it should lead me to recovery. Meaning, I can walk. I can drive. I can do normal things I want to. (if all goes well).

OOOHH  and I can’t forget to mention I am officially no longer on 80mg of prednisone a day!!!  I am down to a whopping 60mg per day.  Still a huge overwhelming amount, but I’ll take whatever decrease-age I can get from that evil drug (which happens to be saving my spinal cord function).

AND if all does go well, once I am “stabilized”  (ETA: 6 months) the plan will be to switch me over to CellCept a more “user-friendly” immunosuppresant drug. …Which from what I read, may eliminate the need for steroids.

We will just have to wait and see.

So, in a nutshell, today was a wonderful day. (I think!!!)

Lupus- What I know so far.

Dec5

What is Lupus??

Some keypoints of SLE

I Have Systemic lupus erythematosus (SLE). From what I understand, SLE is a chronic (long-term) auto-immune disorder. “Auto-immune” essentially means that my immune system (the part of my body that fights off infections and bad cells) has turned against itself, and is actually fighting off my good cells, that I need. This leads to long-term inflammation. It’s mostly harmful to my skin, joints, kidneys, and brain…but pretty much any organ is susceptible to an ‘attack’.
Apparently, each case of lupus is like a snowflake- ‘no two are alike’. Some of my main symptoms are:

  • The ‘butterfly rash‘ where at random, or in response to certain foods, or exercise, my face gets intensely red in a pattern that looks like I put on wayy too much blush. And hot. Very hot to the touch. It can last from a few minutes, to nearly all day.
  • Recurring pleurisy. Where it hurts BAD to take anywhere near a DEEP breath. It feels like the deeper you breath, the sharper a knife gets stabbed into your lung. So, it pretty much hurts to breathe at all, but I kind of get used to taking ‘non-whole’ breaths when I get pleurisy.
  • General discomfort/fatigue. I would say fatigue was my earliest, has been my worst, and most long lasting symptom. I was diagnosed with Chronic Fatigue Syndrome prior to lupus, because of the intense fatigue. On my bad days I have come to describe it as DICTIONARIES. I wake up, and instead of getting out of bed, I lay there. Because it feels like I have 50 of the library’s biggest, fattest, dictionaries (1000s of pages) placed all over my body and I simply CAN NOT get up… or barely move.
  • Sunlight sensitivity- This one is really a wide ranging and varied symptom for me. Whenever I step outside I HAVE to put on sunglasses or I virtually get an instant headache, and my eyes can barely handle the daylight without them. Also, in hot humid air, sunlight breaks me out into rashes. I’ve seen a few different kinds, from red splotchy-ness on my chest and arms, to dozens of tiny blister like bumps all over my upper chest, and sometimes around my back.
  • Raynauds Phenomenon- this one is weird and hard to explain, but basically your hands just get REALLY splotchy red / white, like theres clusters of blood cells in and not in some spots on the palm of your hand. This photo (below) isn’t me, but I ‘ll try to catch a picture next time it happens. Oh, and another thing I find weird about it- is that the large splotches reappear in the same place even if the episodes are months apart.
  • I have had some moderate to severe right side lower back and hip pain (precisely around my SI Joint) for a few years now. In the past few months it has increased to constant pain, at a high enough pain level to bother me in whatever I am doing. Also, I have sciatica symptoms, where pain, tingling, and almost electric shock sensations shoot down my leg constantly on a bad day. It’s hard to describe, but if I imagine being struck by lightning (Starting in the back of my right hip), I think it’s what it would feel like if the lightning bolt traveled down the back of my thigh and curled around the front of my leg, ending in my entire foot where I get the sensation of when your foot has been ‘asleep’ and it’s ‘waking up’- aka super twitchy, sensitive, and quite uncomfortable.

There is no cure. But there sure are treatments. I know there are some lupus- specific drugs out there, but being newly diagnosed, I am not familiar with all of those yet- although I’m sure I will be making choices regarding them sooner rather than later.

My medications: For now, I am on 80mg of Prednisone (steroids) per day. Yes 80mg. It’s a lot. Way too much. But I guess it killing off all my immune cells is better than my immune cells killing ME off. I am on Fosimax- an osteoperosis drug 1x week to save my bones from the Cytoxin (IV chemotherapy infusion) I am receiving 1x month for the next 6 months. The Cytoxin Chemotherapy STOPS cell growth. It’s used for cancer patients, and people with SEVERE lupus that of which do not respond to more mild treatments, or steroids. I also take NSAIDS- Tramadol, Advil, aleve, ibprofun, tylenol… whatever I can take at maximum dosage while trying to protect my liver :) . Neurontin is a pill I take 3x day to help the lightning bolt in my leg dissipate. It actually works really well, with little side effects that I have noticed. Tramadol- I guess is a pretty serious (but non-narcotic) pain medication for the general pain in my joints (but mostly in my right rear hip/low back). It’s used to treat long-term severe pain, but I’d say… it takes the edge off, barely. I’m on a bunch of other medications too- multivitamin pack, calcium supplement 3x day, pepcid 3x day, klonopin (for a REM Sleep behavior disorder), benadryl at night, birth control in 90 day cycles to halt ovulation/ to keep my ovaries on the ‘low setting’. Straterra 40mg 1x day- to try to keep focused- and apparently avoid “Lupus Fog.” Zoloft for the impending anxiety…. and I’m going to be asking my Primary Care Doctor this week when I go in there for some type of nerve pill. All of this disease information is a lot to take in- and I find myself getting stressed out to the max over little things. So yeah, hopefully soon I will be on an optional “Chill pill” ….xanax??

Oh, and I’m also currently on two antibiotics for an abscess that developed while I was in the hospital in the cuts on my forehead from the initial fall I took (with glass to the forehead) when my leg gave out.

I have Central Nervous System (CNS) symptoms, where the lupus has apparently caused lesions on my spinal cord and in my brain. That would be the reason I lost function of my right leg. According to the doctors, it is a small lesion that is hard to see in scans, but it is at the L1 level of my spinal cord.

I guess I will have to watch all my organs closely from here on out- but I know I’ve been told I have a minor heart rhythm abnormality- like a murmur or something.

That’s what I know about lupus- pertaining to me so far. I’m sure my symptoms match a lot of other people’s… and perhaps they are different in some ways.

I think I will research some lupus information and support groups to try to catch up on my facts.

-Rebecca XoXo

Speaking of catching up on my facts- anyone who would like to teach my anything about blogging- I’m all ears!!!! I feel like I am barely getting this right. LOL.

Hospital Stay and Journey to Diagnosis

Dec1

Hello everyone! I am home. I am so happy to be home after spending more than two weeks (16 days!) in the hospital. However, I kind of miss the hospital- I am completely exhausted!  I never thought I’d say that but I do- miss being in the hospital. I have to completely adjust my life to my new disease.  Of course I knew this… but it’s a lot to take on. Now I have to organize soo many pills, meet with the home care nurse, and schedule intensive outpatient rehab with a Physical Therapist and an Occupational therapist.  Thank God for my dad helping make everything around the house accessible for me, since I am still walking with a walker or wheel chair. I have NO idea how I would be doing any daily activities without his help.

Path to diagnosis:
I am going  to make this post about the days I was in the hospital, leading to my diagnosis. I took random notes while in the hospital, so I’m going to try to put them together and (possibly) remember how things all happened. This might be helpful for anyone going through something similar, or just if you are interested in the crazy ride I had in Hahnemann University Hospital.   Anyways, here we go:

Day 1- November 14 (am?)
My mother drove me to the hospital, and apparently admitted as a “Level II Trauma.”  I was placed in a wheelchair, then the next thing I remember was being wheeled into a trauma room in the ER, of which I had never seen  before. Then I was on a bed, being undressed, poked with pins and needles, multiple IV lines were put in, I had an awful C-collar put on and I was strapped down, crying. I think I was crying from pure fear about my leg. I couldn’t understand how I was walking, like normal, and then all of a sudden I (essentially) had no leg.  There were at least 15 people around the table I was on, all actively doing invasive procedures. They did some CAT-scans, Xrays, and probably a ton of reflex tests… being that I couldn’t feel, move, or respond from my right hip down.

Days 2-4 (Nov 15-17)
More MRI’s, with and without contrast from lumbar spine all the way up to the brain. Plenty of Xrays.
They attempted a spinal tap (lumbar puncture!!!) on the 2nd or 3rd day, but were unsuccessful in drawing any fluid. So they did another one the next day under a radiograph machine where they could see the needle going into my spinal cord…then they drew 12ccs of my cerebrospinal fluid and sent it off to testing.

At some point I was moved from the post-trauma/surgical floor to the neurology floor, where I stayed the rest of my time in the hospital.

I was then put on 5 days of a steroid infusion for 6 hours/day to hopefully eliminate the paralysis in my right leg.

Day 5-7 (Nov 18- 20)
After I was moved down to the Neurology floor, everything seemed to start moving forward from there, diagnosis wise. And I met my roommate! Roommates in the hospital do NOT sound ideal, but I  had a really really great one, who probably made my entire stay more pleasurable. She is near my age, very sick and has been through a lot (SO SO much)…but you would never know! She is so independent and strong.  Thank you Judy :)

I started meeting with more Neurologists, and a Rheumotoloist, Dr. Huppert. It is a teaching hospital, so each team doctors came with their own  team of students. Which was interesting, when sometimes they couldn’t even all fit it in the room!

At some point, my tests came back, with the most important one being my ANA Spinal Tap results. The Rheumatologist and evaluated me, reviewed my test results, and informed me I most likely have Lupus. The ANA test seemed to be the major factor in his determination and diagnosis, although he said that my case presented in very peculiar ways,  Oh, and I have transverse myelitis.

Days 8-10 (Nov 21-23)
Judy, my roommate finished her 5 day stint at the hospital, so then it was just me in the room. Which was sort of nice, I did  a lot of reading. And I got the new Amazon Kindle Fire!! Which is AWESOME!!!! That helped me keep my mind off things while I was being tested and medicated all day long.

On the 22nd I got a “perma-cath” surgically implanted into my heart through the top of my chest wall.  That was pretty painful afterwards, and that night I could barely move my neck without excruciating pains.

Immediately after surgery,  I was taken over to the transfusion center to start my plasmopheresis.  In this procedure, they remove the plasma from my blood (which contains the antibodies that are attacking my cells  -good and bad cells) and replace the plasma with albumin. The 2nd day that I received plasmopheresis, I my “fibrinogens” were low, so they had to give me an actual transfusion of “FFP” Fresh frozen human plasma which had been donated.

You can only do plasmophereiss for 2 days in a row, even though I had 5 sessions scheduled.

Day  11 (Nov 24 -Thanksgiving)
Well, for Thanksgiving I had myself a nice dose of chemotherapy (CYTOXIN- 5 hour infusion).  And a surprisingly awful thanksgiving dinner from the cafeteria…. So my parent’s and I ordered a feast from Ruth’s Steak House— Yum—OOohh.

Days 12-15 (Nov 25- 28)
Friday, Monday, and Tuesday I got my last few plasmophereiss, no problems with fibrenogens or weakness.

Day 16 (Nov 29)
Time to go home!!! This day was very frantic and stressful. I’m pretty sure it was just yesterday… but it was a crazy day. I had some random nurse who knew nothing about my case- and didn’t seem to care or understand. Anyways, according to my paperwork, I was discharged at 3pm by the neurologist. However, at 7pm I was having my perma-port removed by one of the surgeons. And by the time I saw my discharge papers, which did not have all the necessary prescriptions written in with it, the discharging neurologist was long-gone, and nothing could be changed anyways. My main complaint about my entire stay at the hospital was last night.  It was so unorganized, stressful, and I didn’t see a doctor the entire day.

BUT I am home now, should be sleeping, but I needed to get some of that info out of me- even though I only remember it in little chunks. It’s hard to separate all the things that happened while I was there.

I am going to end this extraordinarily long post, and try to get some rest. My house is set up in a nearly perfectly accessible pathway and space for me- to live. And do normal activites.

Tomorrow I will talk about how I’m actually doing at home and how exciting/awful things really are :)

Continue reading →

Well, apparently I have Lupus.

Nov29
How it all started….I guess.

Hi, my name is Rebecca. I’m 23 years old, blonde hair, green eyes etc. I’m kinda short; but I definitely make up that for it in my attitude :) However, that’s not quite why I started this blog. I made it to record a very important time of my life.. which I expect to be happy, sad, hard, and fun…. but I wan’t to remember it, record it, and share it!

So I’ll this blog more like a journal or diary with timely entries to keep up with what is going on with me in my life, and just to kind of get things off my chest!! And then we will see where it takes me from there.

————-

So, I’m sitting in my bed in Room 1449 on the Neurology floor at Hahnemann Hospital. Tonight happens to be a rather exciting night… My mom is sitting here painting my toenails fun colors :) while we listen to my iPod on shuffle! Who says hospitals are boring. Haha, the nurse asked if she could just come hang out in our room instead of working.

Bottom line is I’m in the hospital because last week the doctors here finally determined I haveSystemic Lupus Erythematous. “SLE” or as you probably know it: Lupus. It is a chronic autoimmune disease that can affect virtually any part of the body- from the skin to the joints, and even the brain. Lupus causes pain, inflammation and damage- ranging from very mild to very severe.  I haven’t been told exactly what you might call my ‘level’ of the disease…but I am going to lean toward more severe- due to the circumstances of me being in the hospital.  Which is where this post really begins…
I guess I’ll give a very brief summary of the past few months and then get into the actual‘incident’ that actually made the doctors take notice- leading to my diagnosis.

❤ BRIEF HISOTRY ❤  
Ok- I’ve been having low back and hip pain for a long time. Several years. Over the past few months (likely worsened from my job as a Nursing Assisstant/Home Health Aide)  the pain radiated down my sciatic nerve on my right leg, increased in severity, and led to me limping a bit.  I knew something was wrong, but recently moving to a big city,  I’ve found it very hard to schedule a primary care doctor’s appointment as a new patient without a 4 month waiting list. Absurd.

LATE OCTOBER 2011
One night on my way home from work, I realized I had to pee. I was sitting at a red light, and before it had a chance to turn green, I was peeing. I completely lost control of my bladder. In my car. At a light to turn on to the interstate. That’s when I decided I really needed to get checked out. Urinary incontinence is NOT ok for a ‘healthy’ young woman, and especially not ok for me!!!

Obviously in tears- confused and disgusted at what had just happened- I decided it was time to go to the doctor. Not the appointment I had scheduled 4 months back which was still weeks away. I needed a doctor then. So I went home and composed myself, went to dinner with my mom, and then we took a cab to the Emergency Room because I had to get something done about my back pain and bladder symptoms.

Hahnemann ER Visit #1 - Short list of symptom history
Shingles @ 18mos. old, Migraine headaches, skin rashes, pleurisy, back/hip pain, endometriosis, chronic fatigue, generalized weakness and joint pain….and now urinary incontinence

After a typical long wait, I got a room, was examined, and told my workup looked pretty good…but they agreed I should not be having incontinence whatsoever, and wanted to make sure it was not related  to compression of my spinal cord.

Before they took me back for an MRI, the Chief Physician in the ER, took the time to step into my room and let me know she was much farther concerned for me than any spine issues. She stepped in because she had been consulted on my case, and told me she was very concerned for me and felt that there may be an underlying neurological condition.  Presenting with the wide assortment of symptoms I’ve had all my life (but I guess never really connected each together). She specifically brought up Multiple Sclerosis, and lesions in my brain. From there, the night became kind of a fog. I guess a little bit of shock, a little bit of concern, and even a bit of excitement that someone might figure out why I have never ever been normal! (withnormal equaling healthy).

So I ended up leaving the ER with a relatively clean bill of health, but with two referrals to see certain doctors “ASAP.”
Referral #1: Spine Doctor
The next week I had an appointment with the top spine surgeon in the hospital system, and was seen and referred for more MRI’s.

Referral #2: Neurologist
This referral was harder to work with. It was a referral to neurology, but not a specific neurologist. AND, they couldn’t get me in until February.

One week passes, it’s now the first week of November and I am scheduled to see the spine doctor again for the review of all of my MRI’s performed. Still no luck with neurology… and I stayed awake each night looking up symptoms of M.S. on the computer- practically scaring myself to sleep.

Now, listen carefully: if you ever need to see a neurologist fast and you want them to take you seriously, this will work:  All you need to do is get carried into the ER with a huge bloody towel on your head, crying, and a paralyzed leg. But the truth is, it was mortifying, terrifying, and I had virtually no idea what was going on.

THE BIG BANG - Here’s what happened:
Very early on Monday (Nov 14) sometime soon after midnight, I was in the kitchen, getting ready to go upstairs to my room for bed. I’d poured myself a glass of milk and was going to make a small salad. While walking in the kitchen, my right leg completely lost function, feeling, and usage. Therefore I fell forward. I suppose I tried to catch myself from falling with the hand with the least amount of items in it- which happened to be the glass. I went down, my head hit the glass first, shattered it and continued to the tile flooring in the kitchen, where I lay bleeding and most likely lost conscientiousness…? Thank God I managed to fall with my cell phone- where I called my mom (upstairs in bed) for help and a ride to the hospital.

LEVEL II TRAUMA
Next thing I remember is my neck being constricted by an awful C-collar, my clothes gone, and I was strapped down to a table surrounded by doctors and nurses asking me questions, performing exams, and speaking in what seemed to be a super speed language. All I knew was there was glass in my head, blood all over my face, I virtually had no idea if my right leg was there or not,  I was strapped down, and they wouldn’t answer any of my questions. It was bright, cold, and terrifying.

I guess at some point that night they released me from trauma to a post surgery recovery floor and finally I saw my parents. I was lucid, I guess I remember the next few days, but now well. I was just very very very upset that I was a young 23 year old girl who may never feel her leg again. And the doctors didn’t know why.

NEUROLOGY- Progress
The second or third day, they finally got me into a bed on the neurology floor. That is when things started to happen. I guess you could call them good things. Because for two decades, no one had been able to come anywhere near a diagnosis for my ‘sickly-ness’ until I got to this floor. If it weren’t for the nurses, neurologists, rheumatologist, and physical therapists, I’d probably never walk the same again. I’d been tested a ton of times for auto immune diseases because I do get sick a lot and the tests have always been fine.  But finally, I was in the right place, at the right time, and with the right people.

I’ll end this post here, and start a new one of how they did my assessments and diagnosis, and all of the wonderful people I have met during this less than wonderful experience.

I can tell you one thing, because of this experience, NOTHING will EVER be the same in my life again. In good ways and bad. But, I’m going to lean towards mostly good things. You really truly do have to make each moment count.

So, tomorrow I will look through my mini-notebook of stuff they’ve been doing to/testing on/giving me, and how they got to LUPUS. And hopefully how all these things they are doing (including chemotherapy) are helping!

I am sleepy and in need of medicines, In case any one is counting I’ve been here 13 days so far, and am not leaving very soon,  so I will continue to Part II tomorrow-  ”The Hospital Stay- 14th Floor – Neurology”.

Goodnight everyone- God bless you

XoXo  - Becca boo