Tuesday, April 30, 2013

Slowly creeping back


It's not a new word, diagnosis, or concept for me. I was diagnosed with it back when I was a freshman in high school and have battled with it off and on since then. It's not new to my family as many of my family members have been diagnosed with it, and the ones who haven't I am nearly certain have it at least mildly. For about the last 4 years I've been great and I haven't needed to take any medication for it.

The depression kindly took a seat in the back and hushed up, allowing me to be me and to enjoy my life and everything in it. But since I've been continually sick for nearly 5 months now, I feel it creeping back and I can quickly say it is not welcome. 

It's very, very common to have depression with a chronic illness. Being sick for multiple months, and even years; experiencing pain all of the time; not being able to do what you wish to do; being stuck inside because of how you feel; being worried about your current condition, let alone your future.... all of these things quickly build up and leave you feeling a bit hopeless, sad, helpless and angry, even. 

Because depression is very familiar to me, I know the signs and when it's starting to take over and I think now is one of those times. Surprisingly after Spencer passed away (and all the other deaths I dealt with within that same year) I never found myself falling into a depression like I expected. I coped with it fairly well and was able to keep my head above water. I had the typical grief that you would expect and that many think is depression, but really grief is completely different and only mimics it. 

Through the first couple of months being sick with my IBD this year I was doing okay. I was hopeful, optimistic, and was determined to get better quickly and return to my life. But things continued to get worse and worse, and finally when it started to get a tad bit better, it wasn't getting better fast enough. I experienced several set backs, hard truths, and then the sudden painful decisions of having to quit my job, needing so much help from others, and once again uprooting myself and moving back closer to my family.

For awhile I thought I was doing okay with everything that was going on. Yes it's been hard and sad but I was trying to look at everything as an improvement for me and as an opportunity for better things and my future. But about 3 weeks ago I've slowly started to look at things in a different way. I'm disappointed more, I cry a lot more often (and not only cry, but sob), and I just can't quite see the end in sight. Even if I'm making small improvements I'm disappointed and really upset that they aren't bigger. 

Then on top of my outlook on things changing, I'm stressed with my financial situation, the medical bills. I'm worried about where I am going to live, what I'm going to do for insurance, how I'm going to get a job and when I'll be able to start working again. I'm stressed because I don't have a plan and I always have a plan. I like to know exactly what is going to happen and when. But right now everything is completely unpredictable and I just have to take things day by day. 

Being back in Utah I think has exacerbated the depression that was looming over me before. I had plans to be back for about 3-4 weeks to get things finished up with my doctors out here and getting my care transferred, spending time with friends, packing things up and etc. I told myself that in the down time I had I would do some crafts, sew a lot. I had plans to get a lot of things done for an Etsy shop my sister and I want to start. But unfortunately I am not able to do anything like that because something has been going on with my right (dominate) hand where it's hard to grip things and do tedious tasks. I'm not able to do things with polymer clay like I wanted, cutting and pinning the fabric is too time consuming and frustrating, can't hold the needle to cross stitch, my hand gets too tired if I hold a paintbrush too long, I can't color or write for very long because it exhausts my hand. It's been really frustrating because these were the things I was going to do to keep busy. 

So I'm really upset I can't do much at home aside from read and spend time on my computer, which gets kind of mundane. I want to go out and do things! But then when I do I get really tired, very quickly. My stamina still hasn't built back up. I go out for an hour or so and when I come home I want to do nothing but lay down and sleep the rest of the day. That gets really frustrating because if I go out and enjoy myself and the sunshine, I am not up to cooking or cleaning up my mess, but I know I need to eat. So I've been relying a lot upon quick foods that aren't really healthy for me and cost a lot more than making a meal. 

These things just prove to me more that I can't be on my own for extended periods of time and I really need to move back to be near my family so they can help me. Also frustrating because I want to be independent and I hate having to rely on others for help. I just feel so trapped.

I have been fearing that the medication that I'm on for the study (Methotrexate) is not really helping me. I had my fears mostly confirmed during a study visit on Wednesday. It's one thing when you think something yourself, but it's another to hear your doctor express the same concerns. I was talking to my GI about how frustrated I am becoming because I am not feeling wonderful, still. I'm still super tired, I still have pain when I eat. I'm just not bouncing back as quickly as I thought I would. He frowned, shook his head, looked and me and told me that he agreed. He said, "You know, I really thought you would bounce back quicker as well". Throughout the visit he said that he doubts I'll be able to get through week 16 of the study (the week I need to get to for any of this to count and help the study out... after week 16 it's the maintenance phase where you either get the med or a placebo). My GI thinks it's the steroid, Uceris, that is helping me and once I start to ween off that (I have to be off by week 12 I think) he thinks I'm going to end up relapsing and getting sick which would disqualify me for the rest of the study. So once again I am pretty sure I'm going to have to find a new treatment. The next step that my current GI wanted to take was going on Humira. I've been on this before and was less than impressed. I didn't feel like it helped me. But I'm willing to try it again because I don't have options left. Just repeating previous medicines and hoping that for some reason this time they actually work. Last ditch option is surgery and we want to avoid that at all costs. Ugh.

Just everything as a whole is getting to me. I'm really, really missing my family again. I need their help and support. I need a shoulder to cry and lean on. 

I'm ready to get back on my Zoloft so that I can start to feel like myself again and have some positive thoughts go through my mind. I need it so I can cope and deal a little bit better knowing that I still have a long road ahead of me to hopefully get into remission again. I need to believe that this will happen!

No comments:

Post a Comment