Day by Day- Crazy Flare

Rainbow08 March 2014 Saturday

My medication has at least tripled if not quadrupled within the past month and a half. It’s strange how until just recently I can only now feel it affecting me in a negative way. You would think that you would feel such effects when you first started them. I’m sure, and hoping that it’s at least making me “better” but as far as how I feel lately, especially today, I just don’t know what to say. I probably have already said this and I’ll say it again and probably again, I wake up more exhausted than I am when I go to sleep at night. Not to mention I have problems sleeping and have to occasionally take sleeping pills. I don’t take them too often because I don’t want to get used to them and have to take more. Frankly, I just want to be off of all my medication already, I’m over it and I have a feeling all of this has just begun and I do have at least three more months, if not unforeseeably longer to get out of this crazy flare and chaotic war going on within me. I had never wanted to go back on Prednisone again after the first time when I was first diagnosed because of all the ways that it made me feel. I felt like I was merely living, breathing, just occupying space. It didn’t feel like a life, especially on the days that I could not get out of bed because I was so exhausted, in pain, or whatever. I remember frequent and long Leaves of Absences from work and “FMLA,” which I recently had to “apply” for again, after not having it or needing it for almost 10 years; living my “semi-normal” life which we call “Remission.” A blessed state without all of the worry, stress, anxiety, the good days as well as sometimes really bad days. At least that’s a part of it for me as this is the first time I’ve experienced remission and then a major flare that came suddenly and unexpectedly, seeming to want to make up for lost time. Something I thought would never happen. I guess I just hoped that my changed attitude (positive, for the first time in my life) had the “power” to change every aspect of my life, including my health, and make me “well enough” that I would never have to worry about such things again.

So today I had my scheduled monthly massage. I figure since my back hurts a lot and it helps me to relax, I deserve it. I work hard and for so long all I did was live paycheck to paycheck and struggle to just pay the bills, which I was successful at, but barely had money for anything else. Especially while supporting someone else who didn’t see a problem with taking my money, credit card, or debit card while I slept to buy herself things that I could barely afford for myself. I didn’t eat well for a long time, I’ve always had problems with eating because I’m very picky and am not necessarily fond of food. I also have my own complex. One thing that may just sound silly (to use a mild adjective), is that I am very self conscious right now about the way that I look. Some days are better than others as far as my face & body due to bloating since my kidneys aren’t functioning at full capacity and at times there is still fluid in my lungs, but not enough to actually do anything about except to take Lasix. The Lasix had to be cut down because the Hospitalist said that it was the cause of the sudden drop in my Sodium level, which landed me in the hospital a couple of weeks ago. But now that I take it less frequently, I can tell a big difference. Once again I am uncomfortable in my clothes (right when I could finally wear a third pair of shorts- one that for once I could actually button a week and a half ago). I was so excited! How sad. When you feel big and uncomfortable in scrubs, there’s a problem. I have to be careful which socks I’m wearing, especially when I wear shorts because of the edema and then the water retention is more noticeable when the rest of my ankle or leg that is exposed at the top of the sock is totally huge compared to where the sock has made a big indentation in my leg. Sometimes I look down on my thigh and can still see Mia’s (my dog’s) paw print indented on my thigh! When I wake up in the morning, you can see the lines from my sheets and pillow case all over my face, arms legs, back, any body part that I layed on that night. I was 130 lbs. which I’m pretty happy with for the most part and even though I have lost water weight since January 29th when I was at my highest in a long time, I’m slowly gaining weight every single day again. Today was a bad bloating day, especially in my face. It makes it look like I weigh even more than I do and it’s not that I’m eating so much, it’s just some weight and mostly water. I never imagined water could weigh so much. But I guess if the edema which used to only be in my feet and ankles can go all the way up to my lungs, heart, and pretty much fill up my whole body (I’m approximately 5’6″), then I guess that’s a lot of water. It’s so hard for me to stick with the fluid restriction of 64 oz. of liquid a day as I used to drink just five 32 oz. of water at work alone. Though I don’t want to, I’m going to post the pictures of myself. It’s one of the most difficult things I have ever done but I’m hoping that maybe somehow it will help me to just overcome this ridiculous phobia. There are more important things to concern myself with. Like getting better and resting more when my body tells me to instead of being so defiant and stubborn sometimes because there are so many things that I need to or should be doing.

I had my sister totally chop my hair off. I knew it wasn’t a good time because of my frequently bloated face however I was just ready for a change and I chop hair off. I had my sister do my hair and make up today because I just felt so bad about myself, nauseous (I even felt like this during my massage which I usually thoroughly enjoy), overly exhausted, impatient and short tempered, in pain, weak, I had to take my migraine pill today so had just a headache for a few hours, and felt overly medicated. I’ve been thinking about alternatives but want to research it and discuss this with several of my doctors before I do anything differently. You never know what may interact with current medication, or the condition of my body, etc. But I am determined to get off all of these medications. I went to see my PCP the other day because I was coming down with a cold or something. I knew he couldn’t do anything for me but just wanted to make sure it wasn’t something worse than I thought and I wanted to discuss a couple of things with him. I pretty much knew the answers but one of my friends had expressed concern. I’ve been really shaky lately but I told her that it’s all of the medication. I was like this, except worse back in the day when again I was on a lot of medicine. The other day I was changing banks and needed to fill out paperwork. I had to ask my mom if she could fill it out for me. That was hard and embarrassing for me, and I think it hurt my pride to ask for help because I could not write without each letter being a shaky mess. I’d like to say that I have no pride, I am not a “proud” person, but I think to a point, we all have pride. And to ask for help has always been difficult for me, never wanting to burden or inconvenience. Especially when you have to ask for help for something as simple as filling out an application. But I would do anything for anyone that I love. It’s different though, it’s easier for me to give than to accept. My doctor said that he could give me a pill to help me with that (I said no) and he joked that he didn’t want to make me feel like I was a pharmacy. I told him not to worry about that, I already have been feeling like that for quite a while now. So we both agreed to leave it as is, it’s just embarrassing especially when I’m at work and no one knows what’s going on with me and neither do I want them to know. And now with all the immunosuppressant drugs and possibly some of the other ones, my skin, especially on my hands are thinner so it’s easy for me to get scrapes that I don’t notice until I feel them stinging or bleeding. And they take a long time to heal whereas despite the Lupus, in the past (the days of Remission), I still could heal relatively quickly. But then again what do I expect with various immunosuppressant medication?

While gathering the three horrible photos (despite me just not liking them for the reason I stated earlier), and that they are horrible, I found some of last year (and one from 2010 where we went ATV riding and I had a blast), photos that brought a smile to my face as I was having fun and feeling a lot better than I do now, so I wanted to post those as well. These will be my motivational photos, that one day soon, I will be doing these things and more. Feeling alive and vibrant in paradise.

I’m hoping to get over this cold soon. I just returned to work on Monday after being in the hospital and staying home after that for a week. Then I was out again by Wednesday. I’m going to drag my butt to work on Monday no matter what like I usually do, or did before this recent set back. My PCP told me he could tell I go to work even when I’m sick because he will see me and I’m pale, limping, or don’t look well. I didn’t know it was that obvious. Better days lie ahead, right? Right. 🙂

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: