Tag Archive | Handicapable

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

KAFO Leg Brace at Physical Therapy!!!

Jan4

 

 

 

 

 

 

 

 

 

EEEeekk!! I got to TRY ON my brace today.

 

Merry Christmahanakwazaka!!

Dec26

HEY GUYS–

Sorry, I haven’t given any updates since my chemotherapy treatment. It didn’t even make me feel bad other than being super tired afterwards (most likely because all the anti-nausea medication, Phenergan, that I took. Anyways, I didn’t notice much of an affect of it at all, energy wise I felt fine. But I did notice it was harder to (well, more tiring)  to get around. Especially on the wheelchair. It felt like not only was I rolling myself around, but had some really heavy sweaty man sitting on top of me, daring my arms to push the wheels. Ok- that was a little excessive- barely. Then I go back for my next round on Jan 16 I believe.

Anyways, although I am having trouble falling asleep due to pain, it is way to late for me to try to write anything o f worth on here tonight. I will be back on the blogging scence tomorrow morning with lots of juicy details of my past week. Haha, maybe some of them coul’ve been exciting…. SO I will try to do better at writing on here more often, because I enjoy i t. Apparently I can video blog too. So maybe I’ll post one of those every once in a while.

Well, for now, I hope everyone had a Merry Christmas and/or a Happy Healthy holidays!!!! I’m thinking about all of you out there! Happy Holidays :)

xoxo-BeccaBoo

—Oh, random quote of the day:  ”If you’re going through hell, keep on going. Don’t slow down, if you’re scared don’t show it! Because you might get OUT, before the devil even knows you’re you’re there!!!”  -Rodney Atkins

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!!!)

Busy busy day!

Dec16

Quick update of stuff that’s going on…

Yesterday, I got health insurance for 3 more years (that’s a PLUS!)  since mine was going to run out at the this month/year. I got Tricare Prime for really cheap since my dad is Retired Military, so we drove to Fort Dixx Military Base IN New Jersey to get all that done. Then immediately after that I went to my first appointment with a ‘Psychologist’… haha. Let’s just say I will be looking up some new one’s through my insurance ASAP. AND researching them online thoroughly. Talk about unconventional.  She might have a PhD, which is impressive… but I think she lost a few nuts  and bollts along the past  40 years. And then ended up with her office in what seemed to be an old bathroom (with just the sink left) and two couches. Her cell phone was plugged in on the floor, along with a bunch of other random junk next to it….. I’m going to give her one more try next Thursday, but umm- I think I will be moving on .

From there I got home,my mom and I drove to the Cherry Hills Mall (in New Jersey- like 20 min away) and pretty much spent like 6 hours shopping. It was kind of fun, but it took soo long. Then somewhere between  Macy’s and Bed Bath and Beyone I realized my body felt like it hit a brick at wall at 50 mph and I all I wanted to do was lay down!!!    Then my mother and I HAD to get something to eat before we headed home because we were starving! So we went to a place called Houlihans… which I would kinda relate to a TGIFridays.

(a little large)

It was delicious, other than the  fact we got pretty much all fried appetizers  but I was so tired, I could barely move so any food was good. It was a strange because I haven’t been this tired since before my fall/diagnosis. It was definitely a familiar feeling,e like there’s a few dictionaries on me right now (hehe for those of you who read some of my original posts).

Oh, and wanna see the drink I ordered at this restaurant??? I’m not really drinking alcohol (with the lupus I don’t want to hurt my body any more than it is), but I guess I should have read the description better. It was DELICIOUS, but I could only drink like an inch or two down into the drink. It seemed to be never ending!   Check it out :)  —->

Anyways, that was it for yesterday. I was soo exhausted I went to sleep and didn’t even take any ambien! WOW.

Today I’m going to Physical Therapy, then the Rheumatologist!!! YAY. I am excited to meet with him OUTSIDE the hospital setting. I am not sure what to expect for the first appointment, but I will for sure give an update on it later on.

Coping. Doctors. Holidays. Book.

Dec12


COPING

I think I am just now starting to cope with the fact that I actually have Lupus, a lifetime Chronic Autoimmune Disease. And a serious case of it. From what I can tell, when they are planning from the initial diagnosis to start/continue Chemotherapy and 80mg of Presnisone (immunosuppresant steroids) for 6 months… that classifies your disease as serious :(

Now, when I say I’m coping, I’m not crying about it or getting depressed or anything like that. I believe I am just getting over the initial semi-ignorant shock phase. The past week has been pretty busy for me… and it really showed me how different my life is now, than it was just one month ago. Everything is different.  Hopefully I make a strong recovery, but I am no longer independent. I am not dependent, but I am not at the level of complete independence I had and loved.  I feel a little guilty for the inconvenience I’m putting on my family, but I don’t know what I’d ever do without them in this situation.  And my dad, whom luckily is retired, has essentially set his life on hold for me. I just hate feeling like a burden. I’m 23, I was just about to start nursing school, and POOF. Everything changed in a literal blink of an eye. Anyone relate?  But ANYWAYS, onto some other stuff.

DOCTORS

I had an appointment with my primary care doctor earlier this week. Poor lady, I’m fairly new to Philadelphia, so I’ve only seen/met her once before. Then I made this hospital follow-up appointment with her, show up with my dad  (because out of nescesity he goes everywhere with me now) and when she asks what the visit is for… I say “WELL, I know last month I was relatively healthy when I saw you, but…. I just got out of a 16 day stay on the Neurology floor in the hospital, I have LUPUS, Transverse Myelitis, a lesion on my spinal cord and I cannot currently use my right leg.  Here’s my medication list- it’s about 30 pills a day, and the hospital told me I need some additional meds but that I need to see you- my primary care doctor- to get the prescriptions.”   I think her jaw dropped open. She told me she was sorry…. which is comforting and all, but I felt more sorry for most likely completely surprising and overwhelming her. At the end of the appointment I think she was holding back from giving me a hug…

While I was there, I think I got a picture of my hands with a mild case of  ”Raynaud’s phenomenon”

But the appointment was very helpful. She recommended I see some sort of a therapist, dealing with people coping with illnesses- and even possibly family counseling- because it is definitely taking a toll on more than just me.  I’m not big on therapy- but this time I think I might have a thing or two to learn from it. Has anyone of you tried this?

She also prescribed be a benzodiazapine (Klonopin) to take up to 3x day. It’s similar to xanax/valium I believe.

They don’t make me feel loopy, but they certainly do take away some of the absolutely overwhelming body crushing anxiousness I have been experiencing at somewhat random times, and of course stressful times. That was a neccessity- I think it’s from the massive steroid dosage I am on- perhaps combined with everything else going on in general- but I have been soo anxious, in a nit-picky way. It’s  like I lost control of my leg, and therefore I feel the need to overcompensate by controlling everything else- which is difficult in itself. It’s like a crazy hectic circle I’m running in. But- point being, the little green pills help.  AND she gave me ambien, which helps me get to sleep. I never really had a problem falling asleep, but I guess again because of the meds, I don’t really fall asleep at night.  She also told me I need to begin monitoring my “fasting” blood sugar in the mornings to make sure my kidneys are handling all these drugs alright, and I don’t get diabetes. Pro: I’m a gadget nerd and I got an awesome blood-glucose monitor that plugs into the computer via USB and logs my info :)   Con: No more  juices-orange juice, cranberry juice, apple juice, none of it anymore :(   I basically used to live off of orange juice. So I’m adapting to that.

Oh, and I had my first physical therapy appointment (Evaluation) on Friday. One good thing about living in the city- the rehab center is so close my dad just pushes me down there in my wheelchair in about a 5-10 minute walk.  The P.T. said I have ‘clonus’ in my foot, ankle, and knee, but my hip is already strong and on the road to recovery. Iwill need to be fitted into a brace  that supports my ankle and all the way up to my knee. It will be molded to my leg and sent off to be made I guess. She said it will have metal around the joints- and it will enable me to WALK!!! I can’t wait to see it. She also said I have a strong chance of recovery because I have strong muscle tone and willpower :) :)   So I will be going to P.T. 3x week (Mon, Wed, Fri) at 11am until March. I start the actual ‘therapy’ tomorrow and I am SO excited. I’m about to officially be on the road to RECOVERY! (for this current issue at least…)I have another appointment with her in early January a few hours after I see my neurologist for my first post-hospital check up. So that should be an interesting day of doctor visits.

Also, I have  a very important appointment coming up with my rheumatologist (whom I got so incredibly lucky to receive as my doctor in this city) on the 16th of December. After that appointment I should be able to get a handicapped parking permit, my disability coverage, and some sort  of a long-term treatment plan…I think??.  His name is Dr. Huppert. He  is so well educated in many illnesses, but especially Lupus- and he says my case is ‘special.’ I believe he means unique, in the way my symptoms presented? But he wants me as a patient, to understand my case of lupus, and hopefully help me as much as possible. He told me my treatment plan he’s giving me is unconventional, very harsh, but necessary-if I want to walk again. I am counting down the days to that appointment. (Only 4 more!) So, a big blog update will come after that I suppose. Weird, I never thought I would be so excited and full of anticipation to go to a doctor’s appointment.

I’ll give an exciting therapy update on here tomorrow.

HOLIDAYS

So yesterday my mom and I went Christmas shopping. Holey gosh  darn gamoley. It was crazy. First off, in a wheelchair it is a little difficult to get around stores, people, etc…. but there were so so many people. That was my first experience trying to get around in a crowd in my chair. It ended up going well, we got lots and lots of stuff at this amazing outlet mall an hour north of Philly.  We spent way too much money but got oh so much wonderful stuff. :) Retail therapy at it’s best. The wheelchair comes in very handy as a human shopping cart :)

Today I hung out with my mom and one of her coworkers, who is just a bit older than me…and we explored Philly. (Sounds like it would be weird but it wasn’t at all- she’s super nice and we got along GREAT). Anyways, she’s from Boston so we showed her around Philly a bit…We started in the historic Macy’s in Center City- where I got the most adorably amazing pink Coach watch!!!  Then we walked around (I rode in the chair of course) and we had a lovely day strolling through the city- went to ‘Christmas Town’? which is set up in LOVE Park- and had some WARM mulled wine. YUMM YUMMM YUMM. We just did lots of little local vendor shopping- jewelry and such. And we ended the night at my favorite sushi restaurant in the entire city! It was a very good day :) And I made a new friend…. my  mom’s coworker– Erin. :D

Well…. it is 3:30 am again. I guess I should take my ambien and go to sleep so I make it to therapy in the morning!!!! Does anyone else get excited to go to PT? I’m just soo ready for my leg to WORK!!!

—–

Oh- and I just started reading a book about Lupus- called  ”How can you NOT Laugh at a Time like This? – Reclaim your health with humor, creativity, and grit”. By Carla Ulbrich. So far so good. The title alone reminds me of ME, so it’s gotta be good right? Has anyone read it??

I’d love to hear everyone’s thoughts on some good books, routines, coping, ANYTHING!

Goodnight everyone! Thanks for reading :)

XoXo – Becca