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.....


  1. Maybe the 70 hour work weeks were not good for you? Would you be able to discuss a 40 hour work week with them? That way you have more time for your health too.

    1. While a 70 hour week is rough, the week off that I get has been absolutely wonderful. It's been the best schedule I've ever had. But I have wondered the same thing. Is it just too much? Unfortunately it's just all in the staffing of the lab. We have part timers, people who were 5-8s, people who work 7-on/7-off; and some who work 4-10s. I believe the only way I would be able to switch shifts is if there was an opening in another position, and I can't afford to only do part time and I believe all other positions are filled. It can be something I inquire about but from talking with my supervisor in the past about my situation I don't think it's possible.

  2. Nikki-
    Some of us from work have found that you have a blog. We are so heartbroken.
    Heartbroken to learn of you loss. Heartbroken to learn of your condition. Heartbroken to read what you have gone through, and how you have overcome.
    And heartbroken that you lost your job because of all of it.
    you are an amazing person and we are so sad you aren’t part of the team anymore.
    Please let us know if we can do anything for you. Can we bring you some food? Or some flowers? Or just come sit with you? Can we help raise money to get you home to your family so you have the support that you need?
    We cannot believe that even though you work in the healthcare system that your job is not protected. The system is messed up, but patient care is our job and it is very important to us, especially when it is one of our own in need. Please do not hesitate to ask if you need anything at all.
    We miss you, and we care so much about you. When you feel better come back to the lab.

    Love IDRT!
    (Elyse and Mallory)