Tag Archive | good day

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!!!)

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

Hey Hey!

Dec2

Today was a good day :D I felt like a real person. I got my medications on schedule- I think. I’m healing well in my perma-cath port wound. My head wound however, from the initial fall,seems to be getting more infected since they cut it open right before they discharged me at the hospital. But, I will watch it and see what happens.Hopefully it will heal up a bit overnight, and I won’t have to go back to the doctor to have it poked at more :/

Anywwhooo-    
So, today I went out into the world!!! It feels like it has been forever. My dad drove me around everywhere, which I am thankful for…but I like to be independent…and DRIVE! So it was just a little stressful :)

First, I went to my office to turn in some paperwork about my leave of absence, and disability pay. Sadly I only made it to the front door with my walker before my arms were on fire from pushing myself around. So, I sat on the walker and my dad pushed me the rest of the way. It worked, but it was comical.

Then we went to Target!!! Ah, I missed shopping while I was sick. I rode the electric cart thing, which was slow, but it worked great. I got lots of stuff and had some great RETAIL THERAPY!

Then we got home and my mom had bought me a wheelchair!!! I can honestly say, I never thought I would be excited to come home to my own wheelchair…but it is an absolute necessity in my life right now to get around until I regain my strength in my leg.

So then, we walked (I rode in my wheelchair!) down the street to my favorite sushi restaurant, Kansai. Yum Yum.
Today was a good day.

For the rest of the night, I think I will just do some research on SLE Lupus and try to learn more about the new direction my life is going to head. I want to look into dieting, and lifestyle changes I should be making. If anyone knows/recommends any great lupus support or information sites, please let me know!!!