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.
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.
Talk to you soon <3
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.
♥ 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—>
“The more light you allow within you, the brighter the world you live in will be.” ~Shakti Gawain
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
—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
So, I want to get a tattoo. Only one, not large, and I know exactly where I want it. The problem is 1) other people think it’s a bad idea. And 2) I am a perfectionist. 3) I don’t believe it will, but hopefully it doesn’t interfere with my disorder.
I want it to be on my right foot (the bad one) and to say “Hope” in soft, girly cursive letters. Followed by a small butterfly (the symbol of lupus). I know that’s generally what I want, and where I want it- as a constant reminder- to keep on, keeping on.
Idea: Cursive, black, bold “Hope” followed by Pink and purple butterfly. But not a tacky butterfly, a small petite one. OR an owl.
BUT… I also love the phrase ‘Carpe Diem’ (Seize the day). Which is also fitting.
Ahhh. Well I’m certainly not getting one until I am positive. But I’d sure love anyone’s thoughts on it!!