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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*

One year, anniversary of diagnosis Nov. 14, soon after I started my blog.

Nov29

More than an anniversary, an accomplisment, and a year of hardships and triumphs, all interwoven within each other.

You never know what the future holds…

This ‘award’ Inspires me to keep pushing, keep writing, and keep living 1000%!

I got through the worst year of my life, so now I’m out to make the best years of my life come true. Struggles or no struggle, I’ve seen where I’ve come from and where I’ve been. Now it’s up to me to make the best of whatever it is that may come my way in the future.

Now that it has officially been one year since my dramatic paralysis and ultimate diagnosis of SLE Lupus, and various other issues, I have so much to look back upon, and be thankful for what I have NOW… When I think I am feeling poorly somedays (which inevitably happens with Lupus)- all I need to do is close my eyes and think of what I was doing at this time last year. My answer usually comes up as things like ‘Hospital Thanksgiving Dinner‘ <— not recommended.  Or pretty soon, it will be a year since my first chemotherapy treatment. Or plasmapheresis. Or my annual bronchitis. Or some general other hospital stay, or surgery.  On my ‘bad days’ now, I can look forward to the good ones to come- compared to the seemingly less hopeful days of my past year.   :)

Wish me luck… I think this year is going to be a great one. I’m going to get back into shape- gently. And try to have a happy mind and body! <3  I suppose those could be some sort of early New Year’s Resolution…? Perhaps!  Lots of thinking to do.

Ok, goodnight all!!! And Happy Holidays- more specifically Chrismahanakwanzaka!

I’ll keep in touch :) And you do the same… please! I love to hear feedback and know that someone out there is reading this. I hope it helps not just me as an emotional outlet, but others as a personal information source.

Rebecca xoxo

Lupus— it’s a part of me.

Oct22

Sooo, in recent news, I have lupus! No surprise here. But the past few months, in fact, most of the summer I have been doing really well. I have been having some weird stomach problems off and on over the summer- and was considering setting up an appointment with a GI doctor. I assumed it was just related to my lupus somehow- because it seems like everything is… Between nausea, pain, and other various unpleasant stomach symptoms, it was just getting to be enough. But before I had time to get it really checked out, it brought itself front and center.

Long story short- I lost my appendix last week! Well, technically it was taken from me.
(You can see my appendix HERE)

Good news: I don’t have appendicitis!
Bad news: I still had to have surgery.

It all ‘started’ Friday morning where I had an appointment at the Family Doctor, where my mother made an appointment for me because of the stomach pain I’d been complaining about, because she was worried and tired of no answers. I thoroughly expressed my unhappiness about the appointment- stating they wouldn’t be able to solve anything regarding my stomach- as no one had as of yet. Turns out my family dr. thought it was serious enough she wanted to send me to the ER in case I had appendicitis. Ugh… so much for going to work on Friday!

So I went to the ER nearest my house upon recommendation of my family doc- who called them to let them know I was coming. My symptoms were severe cramping, sharp pains in the lower right quadrant of my stomach etc. So I went to there, and from there it kind of becomes a blur. I was pretty nauseous, and I guess I was dry heaving a lot. It got so bad that I actually stopped breathing twice, and was turning purple. I don’t really remember that part that well- other than the fact that it hurt my face and my stomach terribly and that I couldn’t breathe. It got pretty hectic from there, they ended up putting a breathing mask on me, and using some of the equipment behind the bed in the ER to keep me breathing. I’ve never actually seen that stuff used! Once they stabilized me from the nausea/ lack of vomiting,  they did blood tests, exams, the whole work up- told me I looked good and sent me home on medicine for my headache/stomach- Reglan and Benadryl   [On a side note- my family and I have come to the conclusion that no matter how small my medical ailment may be, that from now on I have to stay within my system of doctors (UCH-University of Colorado Hospital) rather than choosing other places over convenience. It's the only thing that makes sense, given the complication, complexity, and frankly uniqueness of my conditions.] ANYWAYS- So I went home, as usual, with no answer. Just temporarily medicated to mask whatever problems I was presenting. I suppose, with me having lupus, the docs just chalked it up to another piece of the disease-not feeling well. I went home- and went straight to bed, as I had had an incredibly tiring day that not only did I feel was wasted, but I stopped breathing twice and the doctors barely noticed. I pretty much felt like I didn’t matter or belong in the ER with my stomach pains.

Turns out, the next day (Saturday) I woke up, feeling even worse. Terrible pains in my stomach, to the point where it hurt to breathe. So my dad drove me to the correct hospital (UCH @ Denver-30 min drive south) Saturday evening after I was sick and in pain all day long. I threw up the entire way to the hospital, and when I got there- they actually got me back and to a room quicker than I’ve ever experienced in that ER.  When I presented to the ER my BP and heart rate were high and my oxygen was low- in the 70′s. They immediately started me on dillaudid, phenergan, and oxygen. From there, I don’t remember a lot… just being in pain, getting scans, and being ‘admitted’ to the hospital, but there were no rooms so I was somewhere in the back of the ER for a day or two. At some point I got a room, I’d say by Monday or Tuesday, but I was really sick so I have a hard time remembering. There were a lot of doctors coming in in groups (teaching hospital) doing exams on me, and I do remember they said my appendix looked perfect in the CT Scans. I couldn’t have cared any less if it was my appendix or not… all I knew was that it hurt very bad, it was making me very sick, and they needed to figure it out. So thats what I told them. Day after day. They told me the only abnormality they saw was some ‘stranding‘ on my right ovary, which could indicate a number of things- most likely not severe. Problem was, they cannot use IV contrast in CT scans for me, because I’m allergic. So they cannot see very specifically into my abdomen. 

Eventually, the doctors, rheumatologists, and surgeons, came to some sort of weird internal struggle on whether they should do surgery on me or not. It seemed to me that just about everyone wanted me to have surgery- except the surgeons! Strange, I know. But I guess they were worried they would go in, and not find anything wrong, and then just cause me additional trouble (for ‘no reason’) regarding healing from the surgery due to my medications and Lupus. After a few back and forths between the surgery team, the primary care team, the rheumatology team, and a big ‘push’ from my dad- the chief surgeon came in my room one morning and said he’d do the surgery as an ‘exploratory appendectomy’, where they take out my appendix (regardless of it’s condition, and then look for any obvious further problems) as long as I knew and understood the consequences.

I was to the point where I was so tired of the pain, I didn’t care if they took out all my organs… I just wanted them to fix it. And I KNEW they would see something wrong if they looked inside. So a little after 9pm on Tuesday night…. they did the laproscopic surgery with 4 holes- two in my belly button, and two more about three inches below the one before.(You can see my appendix HERE)

The outcome was a relatively unremarkable appendix, and about 20 cc’s of bloody material from a suspected large hemorraghic cyst on my ovary that hard ruptured and caused bleeding into my open abdomen. Most of the blood had been absorbed into my body, but this was frankly too much and too gunky (gross- I’m sorry I know) to be absorbed into my body. So there was the source of all my pain! Apparently I’d had a large hemorraghic (blood filled) cyst that had cause the ‘stranding’ on my ovary and then at some point ruptured- leaving all this free fluid and cyst leftovers that needed to be cleaned out of my open abdominal cavity. (Note: normally there should be no fluid in your abdomen- outside of your organs!). It is very rare that a cyst ruptures and leaves remnants (especially so much blood) in the abdomen…so this was not even on the doctors mind’s as an option to consider to be causing my sickness.

OF COURSE it’s rare. Rare should be my new middle name.

I got out of the hospital on Thursday afternoon, feeling relatively well. My pre-surgery was gone instantaneously after the surgery was completed! And all that’s left now is the post- surgical incision pain, etc… but that is manageable :)

So, ultimately, I feel lucky that the doctors went in and did the (what turned out to be necessary) surgery- and I wasn’t left suffering for weeks longer.

Even though this particular ailment had nothing to do with my SLE Lupus, I’m surprised how much it came up in the Thanks to my dad’s stern push- and my rheumatologists’ fighting for me, knowing me as a patient- I am at home and recovering well!

I even have a picture of my appendix! (I was lucky enough to convince the docs to take a picture of it!). You can see my appendix HERE. Haha, of course I would ask for a picture of my organs. Hey… if they are going to take it out I might as well see it! I will make sure it is a linked photo though, so you have the option to click it. Until then, xoxo

—Becca

Related articles

Lupus- [I'm] Stronger than ever!

Oct2

Update!!!!

Right now, I feel as healthy as I have EVER been. No I am not ‘normal’ and never will be. But who want’s to be normal anyways?!  Yes, I have regular visits to the Rheumatologist, along with a handful of other doctors (internal medicine, orthopedics, etc), and I get tired of going back and forth- but you know what- they keep me HEALTHY. I feel a lot better now than I ever did on Chemotherapy and Plasmapherisis.

For those that are curious, here’s my medicine update: I am on Cymbalta (non narcotic miracle drug for body pain AND anxiety), Cellcept (an organ donor recipient anti-rejection medication- because my body’s cells fight against themselves.), a lower dose of Prednisone (7.5mg down from 80!) and a few different vitamin supplements, pain, and sleeping medications. That’s it. It’s about half of what I was on when I last posted in May! It seems like a lot of to some people, but it keeps me healthy. I feel great. My blood work is great. I have not been to the ER or hospitalized since July! That means I went an entire two months without lying in a hospital bed. THAT is a big step.

So, I feel good. I feel great. I still have some hard days, and I’m sure I will have many more to come. But I’m living in the present- and right now it feels good.

Over the summer, I got a job working for a real-estate company in the Marketing department.

Image

View from my office desk!

It’s a growing company, I built most of the website, made the design and branding, and feel like I actually made a difference for the company. I must admit- I think getting out of the house and having something to do, to keep you busy, is important in the health of your mind.

I also broke my foot. I’m sure it’s related to the lupus or the medications somehow, but that didn’t stop me. I went to New York for 8 days (for my job) and walked around with my broken foot ‘air boot’/cast until I physically wore it out. I guess I pushed a little too hard with it. Story of my life!  But my foot is better now, 7 weeks later!

All good news :)

On a separate note, I signed up for Aflac last week. I was pretty excited, that even with a part-time job, and Lupus, they would still let me enroll in the ‘hospitalization plan’ where they pay you several hundreds of dollars per night in the hospital. A day or so later, the representative emailed me with sincere apologies. She said that in the past year the plans have changed, and because of my diagnosis of Systemic Lupus, I could not enroll. I was saddened and hit rather hard by this fact. My exact thoughts were, “Wow, I guess they realized how serious Lupus really is.”  But I quickly turned my frown upside down :) I realized that I have gotten along all this time without hospital coverage from Aflac, and frankly it was greedy of me to want to sign up…knowing inevitably I will be hospitalized at some point in the future…and ream the ‘benefits.’ So why should I need that coverage anyways? Why should I want to profit off of my own pain? I DON’T.  When I realized that, I realized something within me had changed. My mindset, my world view.  I want to be me for me. Not me, the girl with lupus. Nothing can hold me back! (Hopefully!! haha)

Anyways, I will continue blogging, while I’m feeling well, and when I get to feeling sick again- whenever that may be. Hopefully the following posts aren’t as scatter-brained as this one, but it’s been a while since I wrote really. So I had/have a lot of catching up to do!

Moral of the story today really goes back to the quote I posted the other day. Obviously I would rather not be sick, I’d rather run marathons, be skinny again, and lots of other things. But I wouldn’t trade it for anything. The respect for life, people, and the world around me, are completely worth all the heartache and pain I’ve been through recently. I’ve learned who my friends are, and who they AREN’T. True friends are the ones that stick around when things get tough. And I am so lucky to have those kinds of people in my life.

It has been 10 1/2 months since my diagnosis, and it already feels like a LIFETIME ago. Just remember, you never know what’s coming around the corner… so make sure you are happy with where you are and what you are doing, and if you’re not- then fix it! :) Please.

ImageSo I will end my most random but wonderful blog post, with another quote. “I may not have ended up where I intended going, but I think I’ve ended up where I needed to be.” -Douglas Adams

So true.

Talk to you soon <3

xoxo Becca

30 Days of Truth- Day 1

May30

30 Days of Truth- Day 1- What do you hate about yourself?

What I HATE about myself?? Hate is such a harsh word! But if I had to come up with something, I’d say I hate how I cannot quit while I’m ahead. I should know by now that I have a limit on how much I can do. For example, 3 days of waking up early and doing fun stuff non-stop until late at night. The drinking with family and friends probably didn’t help either. But I have noticed a pattern in my behavior. That pattern is, if I do lots of stuff, for an extended period of time, I will pay for it via my Lupus. First, my grandmother came in early May. We had tons of fun, planted lots of flowers and vegetables, and had fun for days and days. Well, a few days after she left, I was hospitalized (of which I wrote about in the previous blog).  I got out of the hospital and within a week my cousin and her husband came to visit. We wanted to give them the ‘Colorado experience,’ so went out to eat at a restaurant in the mountains, we took them to Red Rocks amphitheatre, and went to the casino….all in the first night! I also took them up to Estes Park, and Rocky Mountain National Park, Old Chicago to have drinks with friends, hot tubbing, and a BBQ. Well, by the day they left (Monday), I could barely get out of bed because everything hurt so bad. My wrists, elbows, knees, and ankles were all swollen and extremely painful. My dad had to help me walk downstairs because it felt like I was walking on two broken ankles. Now, I do have to admit that I had a bit to drink the night before, which probably compounded with the fatigue and lupus symptoms. By Tuesday I could walk alright, but I stayed in bed the entire day due to extraordinarily painful stomach cramping and spasms. Which is the same thing that put me in the hospital a little more than a week ago. The only reason I didn’t go back to the hospital is because I just had a full workup and knew I would be ok. So I loaded up on the stomach cramping medicine (doxycycline) which helped minimally at best. It wasn’t until I took two of my morphine pills that I was able to function a little, and went downstairs to make some food to eat.

I was wondering, if anyone who has lupus has this type of stomach issue. It doesn’t have to be accompanied by an ‘upset stomach,’ but can be. The way I’d describe it is like gas pain x 50….or more. And it’s throughout my intestines. A friend and I call it the demons in my stomach, because sometimes you can see it spasming all over. The doctor in the hospital thought it is most likely inflammation in the lining of my intestines, kind of like pleurisy of the lungs…which IS a common lupus symptom.

Anyways, I went to my new primary care physician today and I absolutely love her. Even though I was 25 minutes late (oops!) she sat with me for the better part of an hour, listened to all of my crazy history, and actually seemed to comprehend it and take it all in. She changed around my sleeping medicines because I was concerned 3 different medicines were too many. So now I am going to try 2mg of Klonopin every night instead of Ambien, Klonopin, AND Trazadone. She also refilled my morphine— thank goodness! (I need it worse than ever with this new stomach issue I’m having). She gave me the 30mg extended release for daily use and 30 pills that are 15mg of instant release for breakthrough pain. She also changed my stomach spasm medication to something way more intense, called DONNATAL. Hopefully it will work better, but I don’t pick it up from the pharmachy until tomorrow. So I’ll have to let you know on that one.

My first physical therapy appointment (evaluation) is tomorrow, and hopefully doing physical therapy again will help relieve some of my hip and knee pain. I’m excited to go to the physical therapy appointment, because they will be able to tell me what kind of workouts other than just yoga that I can do at the gym.  Because I am ready to work out and get into super good shape! I have a new goal: to climb all 52 of the 14′ers in Colorado. [for those of you that don't know, that's all the 14,000+ foot mountains in the state]

Back to the subject of what I hate about myself… I hate how I just can’t quit while I’m ahead. As I was saying above, I have definitely noticed a pattern. I will just go, go, go, and I keep going, until I’m falling asleep at the dinner table- literally. Then I’m in bed for days because I just had to have fun with everyone else. I need to learn my limit, which I am quickly doing.  Although, health wise is not the only think I don’t quit while I’m ahead with. I typically talk myself into a hole and wish my foot into my mouth!!! lol.  Hate is a strong word, but I guess being too determined is an alright thing to have to hate about myself.

What about you guys? What is something you hate about yourself? Hopefully nothing! But I’d love to hear your thoughts!

Hopefully the physical therapy appointment goes well tomorrow. I’ll write about it! Until then, ttyl!

xoxo Beccaboo

I’m back!!!

May18

I’m back! …in the hospital :(

Note to self: Add iodine contrast dye to my allergy list.  Because anaphlaaxis is not fun. Let me go back a little…

So, sorry it’s been nearly a month since I’ve posted anything. I know I said I was going to write posts more regularly, however- this move back to Denver, Colorado really took a toll on me.  Right before I left Philadelphia I caught a sinus infection. By the time I got to Philadelphia with my dad, I felt so bad, it seemed like I had a sinus infection, the flu, strep throat, and a cold- all multiplied together. The next day my parents closed on their new house, and afterwards,  my mom took me straight to the ER at the University of Colorado Hospital in Denver. Turns out I had acquired sepsis (an infection in my blood) during the road trip, which kills people on a regular basis. And from the sepsis, I got ischemis colitis, where blood flow was cut off to part of my intestines. So I was admitted to the hospital (staying in the ER the entire time) for 4 days. They were pretty nice there, and had a good staff- other than the nurse that blew out my vein!

Blown out vein- looked like there was an egg in my arm!

That hospital ER is/was so hectic, neither my mom, dad, or I ever really want to go back. It was so overcrowded they had dozens of patient beds in the hallways with PERMANENT signs on the  walls labeled “Hall Bed 1″ etc. However there was good news… I got my new rheumatologist immediately, rather than having to wait 6-8 weeks for an appointment. She is very smart and works at the rheumatology clinic I referred to before I left Philly. I’ve already seen her once in between hospital visits, and I have another appointment Monday.

To make a long story short- after I left the hospital with Bactrum and Augmenten antibiotics, I felt better for a few days. THEN I got a terrible ‘upset stomach’ and had to go back to the doctor. BUT I went to the local ER this time instead. Where they said I had C. diff, (Clostridium difficile) – most likely caused by all the strong antibiotics killing off the ”good bacteria” in my stomach- and proceded to give me a third antibiotic on top of the first two. Now, a little more than two weeks after my 2nd Colorado ER visit, I was back in the hospital again. I talked to my rheumatology office Tuesday, and they said that if my stomach was still upset and painful that I needed to go back to the ER. Blah. So I get to the ER, and of course they want to do a CT Scan to rule out anything life threatening such as appendicitis. My scan ended up ok- but right after it I had a severe ‘systemic wide allergic reaction’ to the iodine contrast dye. My face turned beet red, my body broke out it welts, and my airways started closing up in my chest. Luckily this all happened in a hospital, and the ER doctor was quick to give me 50mg IV Benadryl, IV salumedrol (steroid), and an epi-pen shot. Pretty much saved my life. But they still wanted to admit me for my stomach problems, and then adding the allergic reaction to the mix, they really weren’t letting me go that night. So, while in the hospital, I had a colonoscopy and an endoscopy, which apparently both looked ok, but they did biopsies that I will hear back on in a few days. The doctor said he wanted to at least keep me for another day or two- to get to the bottom of things.  So, I got to go home yesterday… but not with a lot of answers :(

The good news to all that is- I got to wear my new hospital gowns. One is pink with white polka dots, and the other is green with pink and white diamond shapes. They are custom ordered and monogrammed from this super cute company called Dear Johnnies. If you are in the hospital much, I highly recommend them :)

So there is a quick update! Just letting you all know I am still alive and kicking :) Even if I was in the hospital AGAIN. But I’m trying to jailbreak my iphone, watch american idol, and type this blog, all while on a ton of medication (even though I have a stingy nurse tonight who doesn’t want to give me the medications the doctor ordered until I try a ‘lighter version’ of everything.  So I will try to write another blog soon, with more information, and hopefully some sort of a diagnosis!

Until then-
XoXo Becca

Old School

Apr17

Old School

Check out my super awesome new Iphone case!!! I am in love with it… and got it from the (five) dollar store!!!

That’s all for tonight, because in the morning the packers pack up all of my things to be moved to Denver. So I probably won’t be posting again until next week, but I am feeling healthy and am ready to get it over with! :)

Wish me luck everyone! See ya on the other side. xoxo

Quick Update. Life is Good.

Apr14

Image

Not too much new going on symptom wise lately. I suppose that’s a good thing! I’ve had recurring headings the past few weeks. Some have been minor, but some have been migraines unfortunately. My rheumatologist prescribed me Relpax 40mg, which I have been taking at the onset of a migraine successfully for several years now. That way I will have enough to hold me over until I get established in Denver. Also, even though I am taking Ambien 15mg, and 1mg of Klonopin (<–for my separate ”neurological sleep behavior disorder”), I have been having trouble staying asleep more than 4-5 hours at a time. So my rheumatologist also prescribed me Trazadone 50mg to take 1-3 of depending on ‘how effective I determine it is… I looked it up and it’s an antidepressant though, that’s occasionally used for insomnia-off label. Strange huh?  I’ve only taken it two nights so far and haven’t noticed much. So I’ll have to keep you updated on that…
Meanwhile, the professional packers come to pack up all of our stuff Monday, Tuesday, and possibly Wednesday. Then the moving truck should be packed up by Friday the 20th! Yikes!!! That’s less than a week away now. Then my dad and I will do a little cleaning on Saturday, and probably leave with the 2 dogs and 2 cats for the 28 hour drive to Denver on or around Sunday the 22nd. So it’s all coming down to the wire very rapidly! Now we’ve got to manage the technical stuff, like water, gas, and cable services. Should be a fun week. HAH! Wish me luck :)

I also added more photos, and and a video of the ER doctor pulling the catheter tubing out of my chest (slightly graphic)!

Oh, and by the way- if you aren’t following my blog- don’t forget to click “Follow” over to the upper right side of the page, and you will get an email whenever I post a new blog  =)

And I always love comments, makes me feel like people are actually reading my blog! Haha. Have a great weekend everyone.

xoxo becca

I’m Still Here!!!

Apr7
DateSATURDAY, APRIL 7, 2012 AT 6:47PM

I’m still here!!! By that, I mean I’m still in Philadelphia. Looks like we aren’t leaving for Denver until the end of the month. Also, I’m still here in the blogging world. I apologize for my absence. I have mostly been sleeping. Since I got the chemotherapy last (in mid March) I have been terribly fatigued. I guess that is part of life with lupus. “Chronic fatigue syndrome.”  The past few days I have actually been awake for most of the day though. So hopefully that bout of fatigue is over. I believe today is the first day I will have gone without a nap in at least a month! Sad, but also exciting.

Meanwhile, a lot has been going on. As you know, I live with my parents right now in Philly. They are moving to Denver for my mother’s job- my mom actually moved out there a few weeks ago. My dad and I are stayinig out here until we get packed up- in about two weeks. They already found a house in Denver and close on it at the end of the month! It’s pretty nice, I’m excited though to customize my bedroom and stuff.

It’s hard to believe SUCH A BIOHAZARD that has to be handled with such carefulness, is what they chose to put in my body: 

But good news…On the subject of LUPUS… I am officially finished with chemotherapy!!! Now I am on a medication called CELLCEPT. Which interestingly enough is an organ transplant anti-rejection drug.  “It works by weakening the body’s immune system so it will not attack and reject the transplanted organ.” In my case, the ‘transplanted organ’ it’s trying to save is my WHOLE BODY. Because the very nature of my disease is that my immune system IS attacking my (good) organs. I’m only about a week into it, but it seems to be working well so far.

I also started a medicine called Cymbalta. It is 1) for anxiety, and 2) it treats my kind of pain!!! (i.e. bone, muscle, and osteoarthritis pain!) The good part is that it’s a non-narcotic that works by “stops the movement of pain signals in the brain.” I’ve been on it for a few weeks and so far- it’s generally working better than the morphine! So now that I’m out of my sleeping spell, I think things are going pretty well for me.

I have one last Philadelphia appointment with my neurologist and one with my rheumatologist next week… then I’ll have to find the same in Denver. I think I already found a set of rheumy’s in Denver at University of Colorado Hospital. Luckily my rheumatologist here offered to talk to a doctor I found in Denver. I say ‘luckily,’ because I ordered my medical records from Hannemahn Hospital just since November… and they came in a box in the mail. The stack of paper is literally 2 feet tall. I think the doctors I hand that to might get a little frustrated/ or just laugh at me. Anyways, I’m feeling pretty confident that it will work out and I will be in good hands (not to mention at one of the leading lupus research hospitals!)

I think I may have my dad take me out to my favorite sushi restaurant tonight… and that’ll be out Easter celebration. Haha. Sounds like a good excuse to eat some sushi to me!

I plan on uploading a bunch of pictures soon, hopefully in the next few days I’ll be adding stuff! So be sure to check it out! For now, I’m going to check on some sushi!   Happy Easter!

Where Am I Right Now?

Mar19
DateMONDAY, MARCH 19, 2012 AT 2:42AM

Such a multi-faceted question. Right now I am in bed. In Philadelphia, PA. I haven’t gotten out of bed since my chemotherapy treatment on Thursday morning (3/15)…other than to get a drink so I could take more medicine, go to the bathroom, or today- make a meal. For the first time since Thursday- I went downstairs and cooked up some macaroni all by myself. Which I couldn’t eat, because I was too sick to my stomach. Where am I? I am hopeful tomorrow will be a better day. I’ve been telling myself that since Thursday and I think I slept an involuntary 60 hours out of  the past 72. However…. I’m awake, and I’ve been awake for more than 6 hours! And I am feeling better than I was. So that is promising for tomoorrow! Hopefully I will be able to  get up around 10am and actually be productive.  (late, I know- but Friday I got up at 10PM!)  Some people lay around all day out of laziness, and/or love it but I CAN’T handle it anymore! Tonight, when I stand up it only feels a little bit like I havepudding running though my veins. Yes, pudding. That’s the best way I can describle it. Or as if my organs are made of lumpy jello.

The super weakening jello-like, pudding feeing in my veins, has been downgraded to non-contsant. So hopefully…tomorrow I can fix up my room/finish washing my immense amount of clothes to get ready for the big move.  It’s just a couple of weeks away. I’m hoping we (my dad and I- my mom is already in Dever working) can get packed and out of here in less than a month so I won’t have to do any more chemo! I’m guessing the no-chemo part will be a failed plan, but I don’t know how well I can handle another round of it. They might as well just send me up to a hospital bed next time until I recover from the treatment.

Back to ‘Where am I?’ I am a recovering newly diagnosed lupus patient- not letting lupus define me. I’m determined to get back to good health- better than before maybe. I’ve been living in Philadelphia for a year, where I moved back in with my parents to take a hiatus from college. But I am moving to Denver, CO. I’m moving near where I just came from almost exactly a year ago. It’s weird though, because I feel more now that I’m moving “back in” with my parents than I did a year ago. I’m not sure if it’s because I’m more reliant on them with money, healthcare, housing, etc, or what… but I feel like I’m jusst now moving back in my parents. Weird huh?

I am excited to move. I am sad to leave the girlfriends I’ve met here, but excited to get a fresh start. Now that I have a diagnosis, a name and a treatment plan for my lupus- I’m ready to get ON WITH THINGS! Where I am right now, is not where I am staying.

When I get moved, I’m going to learn to the piano. I had lessons when I was younger, I know how to read music and all. I love singing… so I think it will be a soothing release, and who knows, maybe in time I’ll post something if it’s worthwhile :)

I’m also going to start back my college classes so that I can finish off my degree and work on my masters. I’m certainly not giving up on anything. Just trying harder.

In addition to getting serious about the piano (in my case-keyboard), finishing school, I’m joining Lifetime Fitness ASAP when I get to Denver, getting a trainer, nutrition program, and a healthy routine. I think it’ll be easiest to make these adjustments as I’m already in the midst of change. Right? right.

I know, totallly random post again- but I had to say something to feel alive again! I didn’t even open my commputer for the past 3 days. Now that’s a big deal.

Ps- Chemotherapy sucks. But I’m gonna kick it’s butt tomorrow doing laundry, cleaning, and doing some minor shopping. Go me!!