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!

Tuesday, April 23, 2013

He's still alive through pics, videos, and moments that take our breath away

Some days I miss this guy so deeply words can't quite adequately express it. So deeply it just weighs me down. Of course I miss him on a daily basis, but it's something I've learned to live with. It's just part of my every day life. It isn't very often that I miss him this much, but sometimes it just happens, and I know it will continue to happen. I'm finally okay with this.

Today overall hasn't been too bad, but I've had some moments that pulled at my heart strings. I've thought of memories of Spencer and I, and I've had some moments of complete disbelief that he's gone. That he's really, truly gone. Those feelings of disbelief, though very rare, are so powerful! They come about as quickly as they go.

On the 1st anniversary of Spencer's death my best friends gave me a small angel wings charm that fits in your pocket or onto a key chain.

It meant a great deal to me and for the longest time I kept it in my jeans pocket. It went through several wash and dry cycles and it wasn't until I got pulled to the side in airport security, twice, that I decided I should take it out and find another place for it. I had honestly forgotten about it in the last several months until today. 

I decided to do a small load of laundry and when I pulled out a few clothes from the dryer I paused and started to get a huge smile on my face when I found this charm sitting perfectly on the lip of the dryer, in plain sight so I couldn't miss it. I just stood there looking at it for awhile, clueless to how it got there. It briefly took my breath away. I did wash my purse and I honestly don't remember putting it in there, and I also checked the pockets of it before I washed it, but that's the only place I can think of that it came from!

Now I've really never been one to trust in or believe in 'signs' from my loved ones who have passed on. I always just think of it as a coincidence. I don't necessarily know or think it was sign from Spence today, but regardless it sure did make me smile and realize that he's still looking down on me... especially since I was having a pretty frustrating day with my physical capabilities. 

While the above situation made me smile and put me in a better mood, tonight I certainly miss him on a pretty deep level. No tears being shed, I just miss him. As I was looking through my e-mails tonight, I ran across an e-mail from my sister that I completely forgot that she sent me. While I was in Kansas she was looking through her phone and found a video that she took of Spencer Christmas of 2010 -- his last Christmas with us. It's a fairly short video, but it's of Spencer being, well, Spencer -- silly, fun, and quirky. Videos always get to me because they are the most real evidence I have that remind me that my memories weren't just a dream. Videos make his existence real. Tangible. The movements. His voice. 

So it's no surprise that they capture an emotion within me that's just too deep for words.

This is your typical Spencer: I haven't been able to make out some of what was said since my roommates are sleeping and I'm not up to watching it over and over again because I'm certain I might cry, but even if I don't know what's being said I love it. 

The first time I watched this I was really focused on what was being said. But then I watched it a second time. I started giggling a little bit half way through, and then at the end I experienced a huge burst of some kind of emotion that I honestly can't describe. I ended up laughing, a deep belly laugh, but at the same time I had a knot in my stomach, the urge to burst into uncontrollable tears. I quickly stopped before that happened. 

I love watching videos of him. If you have any -- could you please, please share them with me? =)

I love you my SweetPea and miss you every day!!!!

Friday, April 19, 2013

Ch-Ch-Ch-Changes... Again

Instead of some carefully worded post with a fancy and lengthy intro paragraph I'm just going to cut to the chase with this one and get down to the details because I am just not sure how else to do it...

Because of everything recent going on with my health, my life is taking some major changes once again, and I can't say that it's been, or is going to be, easy. Since I've been so incredibly sick I unfortunately had to quit my job. It was one of the hardest things that I've had to do. I sat and agonized and shed a lot of tears over the decision for days but in the end it was really my only option. There was no way that I could return to work on the 16th and I was constantly worrying and stressing over getting myself better quicker than my body wanted to...  And on the other side of things, it was really unfair to my co-workers and my supervisor for me to ask for another extension on my personal leave because I wouldn't have been able to give my supervisor a reasonable return date, not to mention it just flat out sucks to be short staffed. I've been in that situation myself and it makes a wonderful job hell for awhile when you're really busy.

I had a very good talk with my supervisor and things went so much better than I expected them to. He was very understanding, said some very kind things to me and marked me down for rehire, which was not only flattering but a big relief knowing that I'm still in good standing with a company I love and that I would go back to work for in a heartbeat. It's really hard leaving my co-workers and this job.

To my co-workers (since you ran across my blog -- pshh stalkers ;-) Just kidding!) -- You guys deserve to know how awesome you are to work with. You were the ones who made me want to come to work each day, maybe not at 6am BUT you made it bearable ;-). You made working in IDRT really enjoyable despite all the wonderful samples we work with! ;-) I'm so sad that I only got 6 months to know each of you, and some of you even less time. Each of you have an amazing work ethic that I haven't ever had in co-workers before. You each really care about the work that you do and it's to be applauded! Keep up the good work and I really hope that someone in IDRT gets recognized for employee of the month -- I personally think you all should get it because you all deserve it that much!! Keep in touch - Of course I'm on facebook! https://www.facebook.com/NikkiPea12

Now secondly.... because I had to quit my job I'm forced to make some tough decisions. I no longer have the means to support myself, my insurance benefits are gone, and all the money that I was able to save up during the nearly 7 months that I worked is disappearing very quickly. I'm going to very quickly be in a financial bind with all of the medical bills that I have and with general expenses that come from being sick. I also am still pretty sick and I need my families support. So I've made the decision to move back closer to home. I just don't really see any other way. I can't go back to work or get another job right now, I can't do things by myself, and I hate having all of my stuff in two different places.

In all honestly I've been thinking about moving back closer to home for awhile now because things are just not the same as they were when I was married. But I suppose that's another blog post for another day because there is a lot to that.

I hate being in limbo. I'm kind of between a rock and a hard place trying to know what is 'right' and what is 'wrong' for me; my future, my health, my well being, and my happiness. I've just been taking everything day-by-day. I hate not having a plan -- hate it more than ever. But there really isn't a way to make a plan since I have no idea how I'm going to feel from day to day, no, really its been hour to hour.

So as of right now, I have a tentative plan that involves taking it day-by-day. I am going to fly back to SLC on Sunday. Ought to be an interesting and a difficult trip to make, but since I don't have a car and I'm not ready for my parents to help me move my things back, that's really my only option. I have to be in SLC by Wednesday for a study visit with my GI. While I'm in SLC I have to work everything out with my clinic to get my records back home. I also have to talk to my landlord about my lease since I'm supposed to live there until September. Hope that all works out. She has been really sympathetic of how sick I've been so I really hope that she'll understand. I just basically need to tie up a bunch of loose ends before I actually move.

Because this time it's not going to be for just a few months, or until I get back on my feet with my health. This time it's permanent. At least for several years. Many years. I plan to go to school back in KS, NE, or CO... I have many options of where I want to live out here. As long as it's within a couple hours of home (I'm not wanting to go much more than 4 hours away) I'll be okay. Easy access to family if I need them.

SO I'll be in Utah for an undetermined amount of time. It could be through May depending how long I am going to be required to pay rent. If I don't have to pay May's rent then I will be moved by the end of April.

With all of that being said -- I want to see my friends for the time that I'll be back. Yes I may be really sick and not up to doing much of anything. But if we got along, hung out, talked a lot, whatever the case may be, I want to spend some time with you before I move. It's hard leaving a place that I've called home for nearly 4 years. Of course I will visit Utah from time to time, but I can't always see everyone when I'm back. So if you'd like to spend some time together, please let me know! We'll work something out. I am thinking about having a get together at some point at some place before I leave with all of my friends; but that will be determined later.

I'm really bummed about all of this, but I'm trying to look at it as an opportunity for myself. I have to look at things as positive as I can because I feel pretty defeated at this point. I'm really looking forward to being closer to my family and building stronger relationships with them. I'm glad that I'm getting amazing support from not only my parents and sister, but my grandma as well. I'm happy to be back in an area that I used to love to hate on, but now have grown to greatly respect and miss when I'm gone. I'm excited for those summer storms that come through. I'm looking forward to having my own space again. I'm looking forward to opportunities that might arise, and keeping an open mind to everything. And I'm looking forward to the visits that I will make to Utah to see friends and for special occasions that makes our friendship even stronger.

So again... it's not goodbye... it's just a see-ya-later =)

Friday, April 5, 2013

High Hopes...

I've had this blog post titled for awhile now, but I never seem to know quite what to type. These last 2 months have been a couple of the hardest for me physically, mentally, and emotionally. I have been extremely sick with my IBD, which I have had for 11 years now.

It started off more-so as annoying symptoms, but each day it seemed to get a little bit worse. Day by day I noticed one more thing off about how I was feeling. Day by day I was noticing a slow decline in my health for about a month. All the while I was hoping that I'd come out of it. That if I followed a good diet, slept as much as I could, and just had the will to stay healthy maybe it was just a short episode of feeling ill. Deep down I knew that wasn't true. I knew that I was reaching, I guess kind of a point of no return.

So at that point I decided to break down and find a GI. It seemed to take me for ever and during the process I continued to decline. By the time I finally got through to doctors and got an appointment scheduled I realized that I was a lot sicker than I originally thought. I got to the point where I would have to go through a 10 hour shift at work with no food and eventually to the point where I couldn't even drink fluids for a full 10 hours because it would cause my GI tract to move. Which caused me spending each 15 minute break and my 30 minute lunch break in the bathroom with unbearable cramping and a terrifying amount of blood. This then led to complete exhaustion for the rest of the day. Upon arriving home when I thought it might be safe to eat at least some chicken broth and mashed potatoes, I was too tired and sick to cook myself food. The thought of putting nutrition in my body was repulsive because of the amount of pain that it caused me. I would either go to bed hungry and weak, or go to bed and be up at hour intervals throughout the night writhing in pain, bleeding terribly, and wondering if I would even make it to the next day.

I finally had to call into work and let my supervisor know how incredibly sick I had become. I then had to call HR so that I could figure out if there was anything that I could do because there was no way that work was an option for me. My days began consisting of sleep, pain, taking a bath to relax, bleeding, more sleep, more baths, and more and worsening pain. I quickly became bed bound barely even able to move from my bed to the bathroom. Food became my worse enemy so much that I had to stop eating. Ensure even became impossible to endure. I was running off of no nutrition and my muscles were atrophying at a scary rate. My weight began dropping .5 lbs to 1 pound a day. I had no choice but to apply for personal leave at work.

Unfortunately this left me with a lot of fear. Personal leave does not protect my job. I have not been working the year required to get FMLA which would protect my job. At any point I could be asked to leave due to staffing needs of the lab. At no point am I guaranteed to be able to return to work, even if I do get to feeling better. At first it seemed like everyone was going to work with me, and they did. But The return date on my leave approached at a very rapid pace.

My mom came out to help me for about 10 days and it was so necessary and helped me a huge deal. Just her being there in the room as I writhed in pain was a support that I desperately was missing and desperately needed. She helped me to the ER, helped me through the very bad pain, helped me through the tears, and helped me through all of my fears.

I was expected to return to work by April 2nd. After being put on a clinical trial, getting the screening done for it, and then getting my scopes and blood work done, my fear of being able to return to work only deepened. As my mom was here I continued to be sick. There were times where I felt a little bit better and was able to eat small amounts of food -- but it was only due to pain medication that I was able to eat and gain a little bit of strength. I went in about 4 hour stents of feeling okay, then I would have a majorly painful attack of pain, be in the bathroom cramping and bleeding, take a bath to relieve my pain, and then take another pain pill so that I could rest and nap to get up my strength to be able to endure it all again in another 4-5 hours.

I was desperate for relief from this new clinical trial medication. I was planning the things that I would be able to do after starting it. For some reason in my mind I thought it may be my miracle medication like Remicaide once was for me. I took it, and within the next day I was feeling like a brand new person. I had it planned that I did my first injection on Monday and I was hoping by Wednesday I would at least feel the cramping lessen and maybe be able to eat a little bit of food. But I was let down. I was let down a lot. Within the first week, I noticed no difference. The only way I was able to eat was still with pain medication every 4-5 hours. Still having pain that made me writhe, bleed, and cry. But I needed nutrition and food, so I continued to eat and bear through the pain. Very difficult but necessary.

If I was going to return to work in a few short days it was necessary to get my strength back. At that point it was difficult for me to walk even short distances. I had no muscle strength. I couldn't bend down with my knees without some assistance of getting back up. Sitting up was hard to do for long periods of times. Naps were needed every 4-5 hours just to get me through the next 4-5 hours. A shower completely drained all of my energy. And then brushing my hair and looking presentable drained any energy I gained by sitting there for an hour trying not to fall asleep.

As the days drew closer of my mom having to leave and my return to work imminent I started to panic and fear. I felt like I was being rushed to get better. I was so frustrated the loss of control that I had over my health. My body. My life. I was scared of being on my own again without the support from my mom and I was terrified of having to go back to work still so sick. In fact I begin to not understand how of earth I could go back to work in the state that I was in. I needed more recovery time. This is something that couldn't be rushed. So a day before my mom left and a day before the weekend I made the difficult call to my supervisor that there is no way I would be able to return to work on the intended date. I was just too sick and not getting better yet.

He was hesitant. And I could tell in his voice he was upset about it. I can't say I blame him -- being short staffed at work is incredibly hard and overwhelming. But it was very discouraging to me. Yes he was frustrated with my delayed return... but dang it so was I. I got words to the effect of "It just gets very hard on the team having people gone so long" and my heart immediately sank and tears welded up in my eyes before I even got off the phone. For the first time the fear was real that my job is on the line.

I worked it out with my GI and HR to get my leave extended through the 15th of April so that my return to work date is the 16th of April. I could tell in my supervisors voice that even though he approved this, he wasn't happy with it. I was told that extending anything through the 15th was going to be "playing with fire" or some term like that. If I can't go back to work by the 16th, I will likely lose my job and with that being said I don't know what on Earth I will do.

I desperately wish that I could end the story there. Tell you that I am feeling so much better, that I'm gaining my strength back, and that the reason that I wrote that all in past tense is because that's what it is... in the past. But it's not. I am fearing for my health, my strength, my hope, and of course my job.

I was hopeful that my week two injection of Methotrexate was going to help me. But unfortunately week two started with a very severe sore throat, numbness in my limbs, and feeling worse than I have in a very long time. After a trip to the ER thinking that I may be having a weird allergic reaction, and then having nothing done in the ER except the ability to severely piss me off, I went to my primary care doctor and was diagnosed with a very severe case of strep throat with ulcerations and being told that I am once again showing signs of anemia and will likely need to start iron infusions.

To someone healthy, this may not be a huge deal and recovery is within a couple 3 days after starting antibiotics. But to me, this is a huge disappointment and an enormous set back. It caused me to not be able to eat for 3 days again and I have been completely bed bound once again for at least the last 5 days. Because of this I have lost 5 additional pounds leaving me with only 111 pounds to work with. My strength has deteriorated even more and my muscle mass is nearly non existant. The walking that I did with my mom, and the food I tried so hard to consume when she was here so that I could start to get better feels like a huge waste. I lost it all because of lack of care in the ER when I needed it and a stupid horrible case of strep throat and anemia.

I feel like I'm back at square one. Clear back to where I started. I am so  frustrated and I'm feeling completely discouraged. I have tried to have so much hope through all of this. Maybe the next day will be better. Maybe the medication will finally start to help me tomorrow. Maybe I will be able to take one less pain pill. But right now my hope is nearly completely drained. My hopes were far too high for this medication. For a quick recovery. For the road to recovery. For health.

It is just plain scary how sick I have gotten. When I realize the state that my body is in it's almost disbelief. I don't know how I'm pushing on each and every day feeling like I am. Today has been a complete shocker to me and has brought me to tears multiple times. I have realized the amount of strength that I no longer have. I went to fix me an egg sand which for some protein and flavor and the effort it took was huge. The effort it took to stand for more than a minute at a time. The effort it took to get up and down from a chair with my legs nearly giving out each and every time. The effort it took after all of that just to eat. Just to eat. To take this sand which with my hand, put it up to my mouth and chew.... the EFFORT that took was unreal. By the time I got a few bites in I was done. My appetite gone, intestinal pain quickly coming, and complete exhaustion just to make me food to keep me alive.

It's scary. And I am once again feeling so rushed to get better. Recovery is going to take so much time and effort, and I haven't even gotten to the recovery stage yet. I'm still fighting this never ending battle to get healthy. To be pain free. To be able to walk down the short hall, up 5 or 6 stairs to get the mail and then back again without feeling like I might collapse and pass out.

I have never, ever before been this sick in my entire life. I so badly wish I could will my body to corporate with the effort I am putting in to being compliant even though nothing seems to be working right now. I'm terrified this new medication is not going to work at all. I'm 3 days away from my third injection and so far I feel about the same as I did when I started. Once again, pain medication being the only thing that's helping me survive. If this medication doesn't work, I have to start back at square one with a new medication that I've been on before and didn't seem to help me. I have to play the waiting game with that one, too. Do an injection once a week or every other week and just wait and see if it will work. If not, then it's on to last ditch attempts at avoiding surgery and a life forever changed.

I have 10 days... 10 days to get healthy, start to recover, and gain enough strength to get through a 70 hour work week. I don't see how it's possible when I'm still in such a crappy state. I was trying so hard not to look at it in terms of how many days I had left. It was my goal to just work really hard every single day to gain some strength back... but then I was knocked down with additional problems making that impossible.

I'm fearful that next week I am going to have to call my supervisor and notify him of my need to quit due to the status of my health. I love my job. I love my co-workers, and I love my supervisor. It's not fair to my co-workers to be stuck working overtime constantly and doing double their work. I don't know what I would do without this job... but I'm am stressing way too much. I don't know how I'm going to be well enough to return and properly do my job without wearing my body down even more.

What I want desperately more than anything (aside from feeling better, of course... I want my health back over ANYTHING), is to go back home and have the support of my family. I have a great support system here, but nothing like what my own family can offer me. Unfortunately I don't know that that is an option right now. I just feel so stuck. So dang helpless. I feel trapped in this sickly body with no escape. I need help right now, help that I can't ask people here. I need around the care help to get my strength up and it's REALLY hard to admit that because I hate asking for help. But it's so very true right now. =(

This has been an incredibly hard journey for me in more ways than you even realize. So much harder than anything I have expressed here. I'm not sure where things are going to lead. I don't know what is the right or wrong thing to do. I am just trying to hold out hope that something happens, soon,  or that I get a very obvious answer of what I need to be doing.

Your constant thoughts and prayers are so desperately needed right now. I'm at such a low point with my health I just want to surrender.....