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Handicapable

Jan28

Wheelchairs suck. That’s all there is to it. Having to be pushed around by someone else is never an fun idea, suppositionally or in actuality. I’m generally a positive person, but if there’s one sure way to bring you down- it’s a wheelchair, literally. I hate being in a wheelchair. I hate having to sit all the time, I hate having to push myself with wheels that collect dirt etc as I go. I hate it when people look at me like I’m broken. News flash- I’m a pretty damn strong lady. If you think because I’m in a wheelchair and you held the door for me that you are a good person, thank you, but that doesn’t count for your good deed of the day. I’m just as normal as you,  except I happen to be going through visible hard times. Harder than you think, and no I still don’t want your sympathy.

I don’t want to NEED someone to help me. I don’t want it at all. But I do need it. And therefore I blame my wheelchair. Admit it, when you see someone in a wheelchair, you wonder what their sad story is… or you rush to try to help them. But you aren’t helping because it makes it easier on me/them. It’s to make yourself feel better.

I’m going through so many internal and external struggles right now I couldn’t even list them on all my fingers and toes. But I’m pushing through it… I’m keeping my chin up for the most part. Today, I feel angry, tomorrow I may feel apathetic towards it all.

At some point soon, I will write a blog capturing my hospital stay last week (8 days this time). But not right now. Right now, I’m going to practice walking. Because that’s what I have to do. In physical therapy I can now stand up, and [make a step]. And then after one step, there are more.

This week I started my step towards a new happiness. As my dad recently told me, my life is not ever going to be what I wanted or expected it to be…. and I have to deal with that.  I realized that was true. It was a harsh realization, but then I realized something else. Maybe the life I thought I wanted- maybe the path I thought I needed to follow- wasn’t. Maybe this new path has been meant for me all along and will make me better for who I am now.

Just a thought.

 

XoXo Becca

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

The SCARY part of being SICK.

Nov4

I wrote this the first week in November (11/4/2012) but I forgot to publish it.  Here you go :)

So, Friday night I went out with friends. I decided I was well enough I could drive down to Denver to have dinner. Then I went to a (an after) halloween party, because my friends were going. Not a big deal, I had one drink… more of a social gathering. Somewhere between dinner and the party I got a headache. I took some Advil, and tried not to think about it. By the time I got back to my friend’s house, my headache had gotten significantly worse. So I took an extra Morphine. Problem is- they are extended (NOT instant) release morphine- so they don’t really work for acute symptoms. After an hour or so of laying down I called my mom to come get me because I couldn’t drive home (from a combo of medication and a headache).  Anyways, she gets there to pick me up and we decide that due to the severity of my headache- and the fact that I was hospitalized last time I had one- that I’d suck it up and go to the ER.

I get to the ER and I’m pretty nauseous from my Migraine headeache. They took me to Triage and I demanded a ‘barf bucket’. Soon after I was in the waiting room, dry-heaving. But it wasn’t normal dry-heaving. I ended up figuring out it was actually esophageal spasms. What that means, is each time I felt like I was going to throw up/had dry heaves, it was continuous. So I couldn’t take a breath of air. Basically it was like the opposite of swallowing. My muscles were just pushing upwards, so my throat wouldn’t open up for me to breathe. My face was turning all shades of red and probably purple and blue. It was so bad- I remember the old man across from me in the waiting room saying “Come on Becca! Breathe! Breathe!”.  It’s kind of funny now-but sad at the same time. I guess my mom was telling me to breathe in a similar fashion, so he felt it appropriate to join in. It’s all a bit vague to me, because I was SO sick. The next thing I remember after the stranger rooting for me to breathe, was climbing into a bed that they actually brought OUT to the ER waiting room for me. I’ve never ever seen them do that… and I’ve been to the emergency room a lot. At the time I was very thankful, because I could barely breathe, much less walk more than a step back to a room.

They took me to room 6. That’s all that I remember until I felt the pain from a spinal tap, which was probably around 6 hours later. I was curled up in a ball in a bed, barely coherent, but I remember the needle in my back being quite painful. I’m probably the only 24 year old I know, who has had 3 spinal taps within a year!

From what I have learned, after they wheeled me back to my room, they put an IV in my right arm AND in my left arm- just in case they needed both. I was incoherent could not say my name, where I was, or respond to simple commands such as squeeze the doctors with my hands, or move my feet. I’m really not sure what sent me on a downward spiral so quickly, maybe a lack of oxygen?… or just the severity of the pain? They immediately gave me phenergan and benadryll to ease the nausea. It did not help my headache so much, but made me sleepy- which in a way was helpful. I also ended up with two doses of zofran (8mg) and two doses of dillaudid (for pain).  Due to my neurologic symptoms (and general unresponsiveness)  the doctors (yes- plural) decided to give me a CT scan of my head. They thought I might have bleeding in my brain, or a stroke. Apparently my nurse, Kit, remembered me from last time I was in the ER just a few weeks ago. Actually a lot of the nurses/doctors remembered me. Anyways, the ER nurse was so concerned that he went back to the CT Scan with me, and stayed the entire time- over an hour.

Small but dangerous! (My 6 lined up lumbar punctures…) OWW.

Luckily that turned out fine, and some time later I had the Spinal Tap (aka Lumbar Puncture). I had my mom with me, who was able to judge things and fight for me. She told them if they were going to do another spinal tap- my third this year- that they had better call my rheumatologist and ask her what tests she would like performed. Good thing, because she ordered lots of “odd” tests that the ER doc had never heard of.

Looks small, until you realize each of those holes was into my spinal cord- you know the NERVE CENTER of the body! Pain doesn’t begin to explain it after the 4th or 5th timeUPDATE: So, I got the spinal tap... 6 times! Each time more painful than the last. (NOT Normal.) I forgot to mention I couldn’t sit up for at least 4 entire days. I had to lay flat or stand up (including to eat. Because of the immense pain sitting would give me, and not to mention the literal instant migraine. It was a hell of a few days… I was starting to think they had cause permanent damage when the 4th day rolled along and I could still barely move without agony. Luckily in the next few days the pain dissipated. Here’s my ‘holes’ (each one INTO MY SPINAL CORD)

They ended up letting me go home way later that day, when my labs came up ok. My labs were actually all over the place (Eosinophils, Lymphocytes, and Erythrocytes for the most part out of whack), but nothing acutely severe came up I suppose. I did have RBC (Red Blood Cells) in my spinal fluid- ABNORMAL. But we have come to the conclusion that since they stuck me so many times, that there was blood transfered into my spinal fluid.

So now, I have an appointment with an Immunological Neurologist  early in December (referred by my Neurological Rheumatologist (CNS Rheumy)). This should hopefully get to the bottom of these attacks, along with another strange symptom I have been experiencing.

NEW SYMPTOM: Every once in a while (a few to several times a month) that I remember, I will wake from sleeping in an almost seizure like state. My entire body is shaking somewhat violently, I can see, but I cannot talk or move at all. I try desperately to move my hands or anything, but nothing moves until the ‘episode’ is over.  I almost called 911 the other night when I was home alone. It is absolutely terrifying. And the strangest part is that I THINK it has something to do with laying flat. Whenever this new problem occurs, it happens over and over for a couple hours. As soon as it’s over I sit straight up and try to compose myself. But I have noticed, if I try to lay back down- even if I do it slowly- I slip back into this violent shaking state. My head shakes the most. My mom has walked in the room when it was happening twice now, so I KNOW I’m not dreaming it.

Has anyone else ever heard of anything like this?? I really do not like it at all.

Hope everyone is doing well… and looking forward to the holidays!

-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

Questions for YOU!

Sep27

 

This blog is for you my fellow lupies… or generally ill immuned.

Do you ever get mad??? Do you ever get angry??

Of course you do. But I mean at your illness. I find myself getting more and more angry at my lupus. Not only the lupus, but everything that comes along with it. People either judge me incapable, or feel sorry for me…and I don’t want either.  I appreciate when people say how far I’ve come, I really do. I have tried very hard and overcome huge obstacles in the past year to get where I am.

But when people pity me– no thank you. I’m still human just like everyone else, I just fight harder.

——–

Back in December 2011. Too pretty? For a wheelchair? Come on, don’t even get me started!

However, I have to admit… I used to be one of ‘those’ people. When I’d see someone in a wheelchair, I didn’t treat them any differently, but I felt a little sad inside my soul for them. Why? Because they had harder lives than I did…or so I thought.  Truth be told, they were probably happier and more content with themselves than most of us capable of walking. If there’s one thing that chronic illness has taught be is to be more humble. I don’t know half of what I think I do about anyone or anything. I’ve always heard the phrase “Don’t judge a book by it’s cover” but it becomes more true to me every day. One thing I’ll never forget is going to an Easton Corbin concert, and I was in my wheelchair at the time. As I rolled by a group of ladies talking, I overheard one say, “She’s too pretty to be in a wheelchair.”

WHAT?!?! How does that make any sense? If I could have I’d have stood up out of my chair and walked right up to her and asked her to explain exactly what that meant. Bad things happen to good people. Good things happen to bad people. You can be pretty, ugly, white, black, blue, or green- we are all humans and should ultimately all be treated equally. Right?

I’d love to hear your thoughts.

(Sorry in advance for the rant, I will give an update of the past couple months in a day or so. But it is late and that will be one long post.)

 

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

Out with the old, in with the new (the previous old)

Apr11

Look closely :)

Ok, so previously I was using wordpress. Then for some reason which I believe was purely aesthetics, I decided to switch to a paid blogging service…bad idea. WordPress is so much easier to uses and easier for users to find! So, I moved all my blog posts from the other website (Feb-April) back over to WordPress, and I’m sticking with it!
I’m going to work on changing the web address http://lupylady.com back to wordpress asap! Sorry if there is any confusion in all the switching over, and I hope you weren’t bombarded with emails if you following the blog.

It should be normal from here on out :) Thanks for the understanding. Oh, and by the way… I am feeling great! A little fatigued, but what’s new?! I think I’m really on the right track with my medications and health!

Lupus’ Sucky Symptoms

Mar19
MONDAY, MARCH 19, 2012 AT 10:19PM

I felt relatively well today!!! I got up between 10-11am, went out to get breakfast and pet food with my dad, did a minor amount of grocery shopping, and ended up home late afternoon. At some point I started itching. My ‘new’ stretch marks :( started itching. Then I itched all over. Still do. I’m not sure if anyone who reads this knoew about or has lupus, but is this common? Or anyone with gross stretch marks? I feel like they hurt and itch as they are growing in. Today they have become almost fuschia. It is awful. From my belly-button down, and then my hips, and top half of inner thighs. Lupus is SO not pretty.

Anyways- after all that- that’s not my new symptom. I ended up taking 100mg benadryl to try to soothe my insatiablly itchiness, and when I woke up from my benadryal nap EVERYTHING hurt to touch. And still does. Kind of like when you have the flu- and your whole torso/back hurt like a giant terrible bruise? Well, thats how I feel. Like everything touching me is a punch. I looked it up, a little worried, since it seems a bit different than flu pains, and what do you know, lupus is a common cause of this. I guess it’s through the same mechanism as fibromyalgia. But I had no idea. I wonder if this means I’m going into a ‘flare’? I sure hope not. Hopefully it’s just a temporary stress induced symptom and will pass soon…along with my neverennding headache!

On a different note- I am still trying to figure out a subscription/follower link, so bare with me. I might be changing a few things up logistically and the way things look. Or maybe not….

We will see. Please comment if you have any tips or thoughts!! XOXO