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
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.
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 calledCELLCEPT. 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!
Well, it’s just barely been a year and I am leaving Phildaelphia headed back for my ‘hometown’ of Denver very soon. Soon as in weeks, not months. Everything is moving very fast at the moment, and I think it’s still getting faster.
Therefore, today was my last round of chemotherapy. ….in Philadelphia. I fully expect to have more Cytoxan injected into my veins about this time next month, most likelu at the University of Colorado Medical Center. Today was definitely the worst yet. It’s the same dosage everytime I believe, and people told me that each ‘treatment’ feels a little worse. But today I started feeling awful mid-treatment. Hot/Cold, Sweaty, Headache- which I am about to take a migraine pill for, because I don’t think my sexy ice-pack eye mask and advil are going to do the trick. So, I’m going to try to eat somemthing, drink some Visalus —> https://bareccaboo.myvi.net/products.html for sure, even though I’m not hungry. I’m not NOT hungry. And then definitely take a long nap. I’ll put the nap in ‘cat nap’ AND the ‘cat!’ [I’ve been wanting to say that being a crazy cat lady and all, but I don’t thnkk it turned out that funny, lol]
Moral of the story is, man this chemotherapy stuff if tough! I wouldn’t wish it upon anyone- ever. BUT I’m not letting it get me down… I’m just going to let it force me to enjoy my expensive fluflly mattress and 14 pillows.
Until then, I will dream of organized clothes, new houses, old friends, and no clutter to clean before I trek across the country! Sweeet dreams to me
I am moving from Philladlelphia, PA —-back to—-> Denver, CO!!!
Reason being, my mother’s job. She works in the corporate world in real estate management. She actually turned down a possible job in HAWAII for this one, so she must love it. I don’t mind Denver, becuase that’s where I moved here from just a year ago!
It truly is funny how things work out in life- full circle. [Makes me want to watch the ‘Lion King’ – the Circle of Life lol!) But seriously, leaving college, moving back in with my parents and moving to Philly seemed so crazy at the time. Little did I know what would happen health wise shortly after. I mean- had I not moved, I’d have been a one legged jobless student with quite a terrible predicament. However, i DID move (upon some strange instinct). I found a wonderful doctor and team of health professionals to diagnose and begin a treatment. I will be sad to leave the possibly best lupus doctor in the entire region, but I am confident the Hospital of CU Denver will be able to transfer my treatment and care plans right over. Anyone with any experience there (the new Anschutz Campus) with Rheumatologists specializing in lupus or any advice, feel free to please leave a comment below.
Most of all I am excitied for hanging out with my old friends! And House Hunting!!! Except my parents can’t decide which part of town they want to live in so it is quite frustrating and I gave up for now.
On the helath side of things, I just got out of the hospital last night. I was only there a day and a half. They were checking out my lungs since I still have pain and shortness of breath- but it’s just severe pleurisy as far as they can tell. Which is really crappy, but I’ll live, so I’m alright with it I suppose. The did Xrays, an EKG, an echocardiogram, a Lung Function test- which was pretty neat, plus a few more I can’t thing of right now. Soon, I will go by the hospital records room and get copies of all the fun pictures and post them soon.
For now, I’m going to head off to bed so I can wake up early and go to the last day of International Philadelphia Flower show and burn off some creativity and take amazingly beautiful pictures