Tag Archive | shopping

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

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

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!!!