Tag Archive | Anxiety

Lupus really sucks.

Feb11

 

***I will add fun and exciting pictures, videos, and tags when I Get home this afternoon. Hopefully this should keep you entertained for now :)

Ok, So I don’t like the way blogs are so restrictive. I want to make a website. I have too much too talk about and hate jumbling it all into ONE page in a blog. It’s confusing and overwhelming. I’m going to do this regular kind of blog once more at least, and then see if I can figure out how to make a real, dynamic, simple, pretty WEB PAGE :) !!! I am going to try WEEBLY. Anyone know much? It seems like my best option. For exapmple, I want a recipes page, and I want a lupus vs exercise part, and I want a random other life event page… and I feel too restricted here!

Back to the LUPUS discusiion: I was in the hospital again for a lupus flare (stay #3 — Jan 26 through Feb 1). I think it was a week. This time  I stayed on the ‘Women’s floor.’    I asked them if there was a particular reason, and they said because I was a woman. Fair enough. As long as they didn’t think I was having any children. I know the steroids have done their part and all,  but gosh. :) haha

No, no  thing too productive happened during my stay, other than a LOT of tests, medications, exams, screenings, and three more treatments of plasmapheresis. I saw Dr. Huppert every day except Sat/Sun, where he sent ‘Chief of Medicine’ to check in on me and evaluate. So0o0o…

Why was I admitted??

Thursday night, I’m at the hairdresser, getting my hair highlighted (foiled) and I get a phone call FROM my Rheumatologist asking me if I could head to the hospital then to be admitted (@ like 5:30pm!). Apparently my mom had sent him an email, totally appropriate, saying how I had been swelling up very badly, getting excessively red rash-y and my lungs were hurting/I had a bit of shortness of breath.
My response to him was something to the effect of I had 50 pieces of aluminum foil sticking out of my head and could not be at the hospital until at least 7pm. He didn’t say a lot… just that he’d put in orders for me to have a bed ready there tonight and he’d see me first thing in the morning.

Here’s my stats upon intake:  99.4 temperature,  high blood pressure 144/101, slightly high pulse 118, and a pretty high pain level in the back of my hip and down my right leg.

They gave me my normal dosage of evening medicines in addition to a meager 2mg IV morphine.  (In case I haven’t mentioned, I have a ridiculously high tolerance to IV narcotics, and it makes me very angry and almost isn’t worth the frustration of bothering with dosages.) Oh, and I got an injection Salumedrol (more steroids).

Throughout the week, we discovered I was in fact in a ‘lupus flare’- not in remission YET. I had high ANA’s, low potassium, low WBC, etc.  I got another perma-cath installed (surgically) which was an absolutely awful experience. If I ever see that anesthesiologist again, I’d love to shove a huge tube through his chest wall into his heart while he’s awake and in pain. Then tell him it’s ok he won’t remember. WELL I remember. JERK. I told him I needed more medicine, but no no no- the person having the surgery (who has in fact had it before….) doesn’t know her body at ALL.     So I guess to shut me up, in the recovery room they gave me something to knock me out for about 4 hours. Yeah doc, thanks for the help. You’re fired in my book- wait until I get my medical records. You are going on my blacklist!

Anyways, throughout the stay- I was given three infusions of 1000mg Salumedrol steroids to try to control the lupus flare. I was given respiratory therapy (nebulizer treatments and advair a few times a day).

For the Transverse Myelitis (triggered by the flare) I recieved 3 treatments of plasmapheresis. But my FIBRENOGEN levels were too low (in the 70′s rather than the normal 200-300) so they spread the treatments out over about a week. My levels only had to get to 100 for them to do it, but it took a few days for me to get there. The third pheresis  that I got ended up being outpatient- they released me and let me come back two days later when my fibrenogens were alright. LUCKILY….they were 101! Woohoo, I beat the 100 mark.

I ended up doing the 3rd plasmapheresis ‘outpatient’ on Friday, so I couldn’t get my perma-cath port removed until Monday  in the surgeon’s  office. Too bad that plan didn’t work out.

The EMERGENCY Room Visit….

So, I’m getting ready Saturday morning, doing my hair, almost totally ready… and I go to put on my shirt and my port starts bleeding out through my tagaderm. Like, leaking out….by Monday I’d be toast.  So, Plan A- go get nails done with mom and paint pottery. Cancelled. Plan B- Why not go hang out at the hospital??? I mean, I’m starting to get recognized on a first name basis- in a Center City Philadelphia hospital. No big deal.

So, really they just have to make sure it’s sterile, pull in a surgeon, and he can pull out the catheter. Ohh… I got a video for you guys :) If your squirmish, maybe my mom talking about my grandmother being scalped the entire time will calm you down :)

That went really well. The doctor patched it up with some gause, gave me the standard keep it clean and dry speech, and said if it leaks too much to come back to the ER, but it might ooze a little. All done….. so I get up, get my pants on, my KAFO leg brace, move on to my bra- and all of a sudden my bandage area (top of right breast wall) became very warm. I looked down, and turned to my mom. I’m pretty sure I was concerned about getting my new bra OFF because my body was literally spilling blood. The blood started ballooning out the tegaderm  (clear bandage) over the gause. Eventually (which was all in probably 3 or 4 secs) I opened the curtain expecting the doctor to still be out there, and said “Uh- I think it’s a little more than oozing…. DOCTOR”

Some other doctor (student?) rushed in and was freaking out trying to control the bleeding. He didn’t know who I was and was apparently trying to discharge another patient, but he was nice and came in and applied pressure to my gushing wound. Ooops, emergency. Haha, nothing ever seems to go right for me. Turns out, my surgeon who pulled out the tube had already made his way somewhere else in the hospital. So 10-15 minutes later the surgeon comes back  in, maybe 2 minutes after the student doctor left and asked my mom to apply full pressure on the gause pads on my chest so he could go try to find a doctor. The surgeon said applying pressure to the wound just holds the blood in…. that that wasn’t helping anything. I was bleeding out of my JUGULAR…

So after 20 minutes of pressure on my jugular by the surgeon, it still bled. Then the surgeon told us to apply heavy  pressure there for 15 more minutes, patch it up, wait 15 more minutes, and then see if it bled. Finally I was in the clear and got to leave!!!

About Lupus sucking- I’m not even going to start with the stretch marks. That’s another story for another night…. but I’m telling it because gosh darnit, it is NOT cool… I am going to try to see a nutritionist. Because if I don’t get off these steroids soon, I am going to lose it- mentally….certainly not physically. Anything that goes into my body seems to stay in pounds.

Physical Therapy

So, being in the hospital, I had already been ‘off’ physical therapy for about a week and a half. Which is a bummer, because I like my 3x week of therapy. Makes me feel like I am aiding in my own recovery. I go in Monday, not feeling 100% , and she told me I should be discharged for a few weeks :( Then come back. No way! I told her how abotu I come see her next week. So I will go back to her Wednesday, after I see Dr. Huppert (my rhuemy) on Monday.

Oh, I also don’t think I wrote anything about my hospital roomie Judy coming to visit!  That all happened before the hospital visit luckily! Hopefully we get to visit again soon, and relax!

How could you NOT laugh at a time like this??

Dec15

Well not much to post tonight. Long day yesterday without accomplishing much! Long day today, was awake  for most of the time after 6 am but I refused to get out of my warm bed :)  I started reading the book How could you not laugh at a time like this, about a lady and her sturggles and triumphs through lupus. So far so good.

Then I had my 2nd ‘real’ physical therapy appointment today. It was pretty exciting :) I WALKED on the treadmill!!! Although I was being supoorted to make sure I didn’t fall by this bungee jumper/diaper fit /lift thing, forced to hold on to the side bars, and my maximum speed was 0.7 mph lol. Also my foot was ace bandaged very similar to how the brace will hold my foot in place. The P.T. said on Friday she will get a prescription for  the leg brace I will need from my rheumatologist, and hopefully next week it will be molded/casted to my leg and I will be able to ‘walk’!!!! It’s going to be super sexy. Medical grade plastic casted/fitted to my thigh with metal bars from right below my hip all  the way down to my ankle and foot. There will be around 30 degrees pivot room for my knee, and some degree of movement allowed in my ankle. But she said this brace allows paralyzed people to walk. So I am EXCITED… to regain some independence.

Speaking of inspiration, here’s some signs I love posted up at my rehab center….
BELIEVE           BELIEVE

After P.T. today was kind of tough, just really stressful. No particular reason, other than spending time with my dad 24/7 is taxing on both of us, no matter how much we love/like eachother haha! No matter what, I feel like somewhat of a burden- simply due to  my loss of independence that I had just one month ago.

We were going to go grocery shopping today, but some things came up, so that didn’t happen. I was kinda upset cause I have this coupon for like 36 free AA batteries@ Talk about a coupon… that’s more like a gift card :) )

But I may end up just going  tomorrow morning or Friday.  For my lupus/immunno-supressants I’m on, I’m supposed to be severely limiting my sugars and salt content. I also need to go by GNC and get more Turkey Jerkey and  Total Lean Shakes (Swiss Chocolate) mmmmm they taste soo good. I got some biotin today, because my hair has started coming out a little bit in clumps. Not a lot, but it never happened before…so I assume it’s related to the chemotherapy and everything else going in my body right now.

And then I ended the night with a lovely dinner at an Italian Restaurant with two new friends Erin and Debbie and a couple bottles of wine.  Great people, great conversations, and great food! What more could you ask for to end a night?!

    
Tomorrow afternoon I have my first appointment with the Psychologist to meet/greet her and see if she would be of any help to me in dealing with and coping with this diagnosis that was essentially thrown into my lap. So I’ll give some sort of an update on that for sure. I think I may stop by my primary care doctor’s office and see if I can talk to them about my meds. I left a message last week but no response yet- so I think I’ll just show up. I think I need a prescription for Xanax for when I get super overwhelmed and stressed out over everything, rather than the Klonopin, which was originally prescribed for me 1x/night (to decrease the electrical activity in my brain) for a REM Sleep disorder…not anxiety.

If you have time, I’d love for you to fill out the ‘Poll’ thing I put up about how you found my site =) I’m still new at this so I like to know how it all works!!

I am pretty tired though, so I’m going to get some shut-eye now, and if I can keep my eyes open for long enough, perhaps I will  read a little of my lupus book.
Have a fantabulous night everyone <3 :)

XOXO Becca

Ooofta!

Dec7

Wow. It’s 3:30am and I should be fast asleep, but I stayed up to take my two antibiotics scheduled to be taken at 2 am… and really I am still up because this stupid blog. Just kidding, it’s not stupid- just extraordinarily frustrating. All I wanted to do is get a cute, unique theme different than most peoples’ and the WordPress site has given nothing but trouble.

If anyone knows how to upload a blog (from an outside .zip file) onto WP, please please  let me know! I think I might have spent literally like 5 or 6 hours trying to figure it out and have essentially gotten  nowhere other than I paid to register my domain name http://melivingwithlupus.com . Woohoo….

While I”m ranting, I might as well tell you about my lovely day. I decided to take up this new hobby of  COUPONING. Not just because of that new show, I have always liked coupons for some reason, but the new show made me want to go all out and try it. So I did… while I am still crippled in my right leg, riding one of those awkward electronic shopping  carts, following my poor dad around the store as I sorted through all my envelopes of coupons and what was on my list… all while we were in an overcrowded Philly grocery store that I decided to try out to see if it was better than any of the other crappy grocery stores in the city. My dad restrained his frustration very well, but I was stressed out too- due to everything culminating on me, and slowly overwhelming me until I felt like I almost had a nervous breakdown as soon as I got back in the car. Hopefully all the anxiety was from the massive amount of pills the doctors have me on, and hopefully they can put me on another one (lol, yes another)  for occasional anxiety. It wasn’t like a  panic attack- it was more like a whirlwind of a tornado was spinning around me… and then my lips went numb. Not sure if that’s normal or not, but  it was weird.

Anyways, later on (like next week) I might start writing on a separate page/tab about my couponing experiences.  But to sum that story up, I saved $89 on about $300 of groceries, so I think I did rather well for my first try! However, I’m not sure that 90 bucks was worth the 3 days it took off my life expectancy! I guess the culmination of not being able to walk, barely being able to navigate

Early tomorrow afternoon I have a follow-up/update that btw I have lupus appointment with my primary care doctor. Hopefully she can give me something to calm my nerves for situations like that.  And/or hopefully I will just get better at dealing with things in a different way. This is definitely a learning process- that it seems  like you find out piece by piece how it actually affects you. the over-crowded store I didn’t know my way around, sorting through coupons, and trying not frustrate my poor father who had to tag along the whole time- made me a little anxious! Check it out at the end of the near 3 hour shopping trip… this is how I felt as she was scanning all my coupons at the end. This is the face of hope- hope that all that damn work saved  some money!!!  (Which it did).  But next time I will try a little different of a technique. Hopefully things will be able to move faster, and with any luck I’ll be walking! Even though my first Physical Therapy appointment isn’t until FRIDAY.

Anywhoo…

We will see what the doctor says tomorrow. I suspect she will recommend a therapist, which is an idea I have never been fond of. But for some reason, now it seems like a decent idea.  I’m going to need a bariatric surgeon pretty soon too if they don’t get me off this 80mg of predinsone per day. Ah it”s like my stomach just doesn’t have a stop button.

Well, hopefully tomorrow will be a better day. I plan on going to the doctor, reading some of my Stephen King book about the Kennedy assassination to relax, and then possibly screwing around attempting to install a prettier theme on here!!

Tomorrow will be a promising day, I’m sure of it :)

XoXo Becca