Not Amazing

I am not amazing. I have heard that several times this week. I have heard a few other opinions as well. I have lived with chronic illness for most of my adult life. Very early in my 20’s I learned to accept a new normal. I wake up, and I don’t have the energy everyone else has, I never had that. I had to accept that I would assess the energy I have for the day and use it and be happy. I admit I have not always done that. For years, I played the sick card. I sat on my ass and waited to feel better as if I am entitled to feel good.  I don’t do that anymore, and that is the reason that people think it is so amazing that I try to do the same things they should be doing.  Quite honestly, it pisses me off that people who could achieve physical, education, or other goals sit around and say that I am amazing.

I push through the pain. When I started running a few years ago, I thought I would hate it but I didn’t. I realized that it was another way I could learn to deal with the chronic pain that I experience every single day. Pain changes the way you think and the level of crap that you are willing to accept in relationships. I find myself throwing the bullshit card much more often these days.

I know what works for me. It won’t work for everyone, and I don’t judge others with my same challenges. They need to learn what works for them. As far as others judging my choices, I find it funny that they think they know more than I do about what it is like to live in a broken body.

Currently, I want to complete a half marathon at the end of April. It is very unlikely that will happen considering the last week and my challenges. I have had several medical issues, both new and unexpected and extensions of old ones that are no surprise. My list of ologists continues to grow, and I am ready to step out of the ring and tell them when they come up with a plan to let me know. I have done this in the past. Maybe it is a bit passive/aggressive but I need to know and understand what I am doing.

I am not sure how specific I want to be about some of the health issues that have caused problems this week. I will say that I am really sick of pneumonia this winter.  Getting three invasive GI tests in a five-day span was just STUPID and will NEVER happen again. Not only did I agree to the three tests that required two preps (anyone with IBD can relate), but I continued my usual routine (including running and working).  VERY STUPID. This threw the thyroid out of remission and then I started to have cardiac issues. Now I am convincing cardiologists, endocrinologists, and the other team of ologists that I am ok. If I hear ‘just as a precaution’ one more time I will scream.

I am sure of one thing; I will not sit on my ass and wait to feel better. It never works for me. I need to continue to keep my goals and schedules and plan my day the way I always do, by assessing my energy and pain and setting my goals for the day accordingly.

This week I wanted my long run to be ten miles. It could have been outside because the weather is great. That will not be happening. I ran yesterday, only two miles but it was outside, and I was successful. I will be trying for an outdoor 6.5 mile run tomorrow, and I will be cross-training all week. It is looking like I may not be able to finish the half in April, if that is the case, my new normal will be to accept that I can finish a 5K and pick a new date for the half later in the year.

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I’m Back

It has been over a year since I completed the Rock ‘n’ Roll half marathon in November 2013 for Team Challenge. I had some difficulty recovering from that, but I never stopped running. The training helped me fell better. It helped more than all of the appointments, medications, and every other demand that Crohn’s places on me. For me, running is the best pain control. I am able to get away from all of my stress and relax. But after the RNR half I was in trouble. I was no longer in remission, and the enteropathic arthritis kicked my butt, literally.

The following year I completed several 5Ks, but that was not satisfying. It was like a regular run. I wanted to do another half. I want to do it better this time. So I started pushing again. I am increasing the miles and speed. I tried intervals and decreasing and increasing pace. I even add in recovery time for all workouts over four miles. I was shocked to find that all of that helped. My time has increased, and I do not have nearly as much pain.

So now for the new goal. I want to complete a half this year and a full next year but a goal is a dream without a date so now I have a date. The half is 4/26/15. I will be running the Columbia Half Marathon. I only have ten weeks, but I have regularly been running so I should be able to get on track. I also have been trying to be better with cross training thanks to Ryan at Fitness 19 in Elkridge.

Concerns:

1. Limited time. I would like at least sixteen weeks.

Solution: Suck it up buttercup!

2. Training indoors. I have been having trouble with an upper respiratory infection (like everyone else) since October and joined Fitness 19 so that I could regularly continue running. I also was hoping that I would start doing a better job cross training. Both are working out.

Solution: Trust Ryan. He said to increase my incline so I will have to suck it up and do it.

3. Continued chronic pain. Old story. I will have to deal. Any other stuff going on is also old news. Tired of being at the doctor and all of the pointless tests that tell me how sick I already know I am… Whatever

Solution: Once again, SUCK IT UP!

I do not care if I finish…. LIE! I totally have to finish this!

No Cure

There is no cure for crohns disease. It is also not my job to make you feel comfortable with the fact that I have something that has no cure. I don’t need your pity, but I do appreciate your understanding. I do not always accept what is happening to me. I do not always want to run off to the doctor and get that next test. This test will not cure me. The next surgery will not cure me. I will have no guarantee that I will even reduce the medication that I need to maintain remission. Sometimes even I think this sucks.

I am not a fighter. I am not brave. I drag myself out of bed every day and force myself to swallow a dozen or more pills. I pass by food that I would love to eat because I know I will be sorry if I eat it. I force myself to go to the doctor and get my infusion every month. I am not brave about it. I whine and complain when they start the IV. The infusion burns.

If I need help, I will ask for help. I do not mind answering questions but please don’t expect me to soften the answers to make you feel better about being more healthy than I am. I think I do ok with this. Most people with my medical history are on disability, not training for marathons. I choose to do those things, and I work hard to stay as healthy as I am able, which is often more healthy than my so called non-crohnie counterparts.

Not so happy holidayzzzz

I intend to get through this season without any drama. HAHAHAHAHA I foolishly signed up for a late season race (early December). It was only a 5k so I knew that I could finish and was hoping for a great time until I started getting sick. For some, that would mean cancelling, oh but not me. I cannot cancel the race. So I keep running and getting sicker and sicker until I have achieved pneumonia. Does that stop me from running? NO. I run anyway. I finished and in a respectable time but not my best.

While I am running regularly and before this event, I did something stupid. Well, several things. It resulted in me getting hurt during one of my regular runs in my neighborhood. I did not follow my rules. That is all I want to say about that for now.

Another change is that I am now living alone. Well, not officially alone, I still have the kids but I am alone.

Today, Wilber is being a real pig. Wilber is my Crohn’s. Yes, I named it. I live with it, so I thought it deserved a name. Wilber is a pig and a nag so I thought that was a perfect name. I don’t get bothered by the stomach stuff so much, so running to the bathroom ever ten minutes does not bother me. So off to work I go.

No drama, maybe not but I do intend to stay happy.

My love/hate relationship with interval training

I am no running expert. I just started with the Rock & Roll Half Marathon last year. I trained for several months with Team Challenge and raised money for CCFA and ran most of the half marathon in Las Vegas. I did a respectable job.

There were some problems. First, I did not have enough time to train. Maybe the amount of time was sufficient for others, but I needed more.

Second, I had an issue with enteropathic arthritis (it is crohn’s related and osteo in nature). I had a very difficult time recovering from the race because of the arthritis.

Third, I am a lone runner. I do not do well with groups. I feel lonely at the end of the race, but I don’t know how to run socially. I guess it is not my thing.

I have been able to work my way up to 3-4 miles and have completed several 5k events this year. I tried obstacles, and that annoyed me. I tried a mud run, and I found that very unpleasant. I ran the 5k in the Baltimore running festival event, and I did well with that but again, I was lonely at the end of the race.

Another issue is that the 5k events are just like another training day for me. I am not challenged enough. I have decided to go against medical advice (are we surprised) and increase my mileage to a full marathon.

I do not have an event in mind; I will be working toward a 10k, and then a half, then the full. I am thinking over the next two years. As you have seen in some of the earlier posts, I have started with interval training. I failed at this type of training with the first half I tried. I am stubborn. (Sorry mules) I would know it was time to slow my pace and recover, but I would remain at the same pace for as long as possible. Well, I am not doing that this time. I am running and then walking and then running again. I find this hard to do. I have completed 10 interval workouts in my plan, and it is getting easier, and my pace is picking up but this is still hard.

I will keep up this and oh; I have also signed up for another Team Challenge event. It is the Team Challenge Lite 5K next month. If you would like to support me here is the link!

http://www.active.com/donate/baltimore5kMSD/TCMD_14PNeal

Thanks from me and all of the 1.4 million people who live with Crohn’s and Colitis!

I Fight

I don’t fight my disease; I fight my insurance company. I see at least four doctors. I see each doctor numerous times per year. I did not anticipate this when I was in my twenties. I thought I would be seeing a doctor once per year any maybe the OB/GYN regularly. I never thought I would be seeing multiple specialists over fifteen times per year.

I get infusions every five weeks. Eleven times per year. Each one is over $5000, and that does not count the visit or any lab work I may need if I am sick.

My medication costs $75000 per year retail in the US. My copayment requirements are over $1000 with my insurance, and I have two medications that are not covered at all. The medications have been declined. I am only able to afford to pay cash for one of the declined medications. I am non-compliant with the immunoglobulin therapy. The insurance company states that it is experimental and when that argument was dispelled; they stated that it was not cleared for my autoimmune disease (any of the three apparently).

Speaking of the insurance company and denials; most of my lab work is declined and the test to confirm one of my autoimmune diseases was declined, the lab work that checks the level of my chemotherapeutic drug levels, and my anesthesiologist for invasive tests have all been declined.

I do not fight a disease; I live with three diseases. I fight my insurance company. I am financially devastated, and my children cannot attend college as I wanted. I will never retire, and I will never own a home of my own. If it were not for the generosity of my family and friends, I would be homeless and not able to be as compliant as I am now. I would be disabled.

Yesterday was Day 1

749737-1026-0043sI want to run a full marathon. I have already been told I should not do this by at least two of my doctors. This brings up many topics to discuss. Goals, physical health and how that helps with medical treatment, and medical compliance just to name a few. I ran a half marathon for CCFA (Crohns and Colitis Foundation) with Team Challenge. I ran the Rock-n-Roll Marathon in Las Vegas last November. I was somewhat successful. I finished and within 30 minutes of my goal. I did have some issue that led to my doctors advising me not to try this again, but I think that there were some problems with my goal and my training that I could fix.

I was never considered a runner by some (not all) of the people with that organization helping to prepare. I was also a bit older and have been suffering a bit longer than most of the other people. The other runners were younger than me. Some have much more serious issues with their inflammatory responses than I do, but I never considered that twenty-four years of Crohn’s damage could and should be a factor in my physical health considerations. Doctors twenty years ago were not or maybe could not be so aggressive with treatments. The treatments that are available today were not available to me. I realize now that I have damage that the younger people will not have to endure. This is a good thing for them. It means that they may be closer to helping people recover and not just endure this illness.

I tried to train in a reasonable amount of time for a younger and healthier person. I need more time to become strong. My goal will be a half marathon next year and a full marathon the following year. I have plenty of time to build up and recover and become as prepared as I can.

I was too driven to finish the race. This time I want to concentrate on the training. I felt great while I was training and becoming stronger. As I approached the date and it started to approach quickly, I panicked. I did not give myself any time to fail and try again. I think that one year will give me time to have good and bad training days. I will start with training schedules that are very realistic, and I will be able to build my endurance.

I was unrealistic. My goal is to train for a marathon. That is all. Now all I have to do is find a team of people who can help and support me. Until then, I will be using my running program to help me learn to prepare correctly. I will be researching and learning what I do not know. My current program has several options, and one is a building endurance training program. It started with an interval training day. It was quite easy and hard for me. The first workout was just over twenty minutes. I am easily able to run for that amount of time. Interval training is a bit beyond me, but I followed the instructions and walked when indicated. That was the hard part for me. I am not sure how that helps build endurance, but I have read many articles that state interval training works.

Question of the day

Today I was asked what was the difference between Crohn’s disease and Celiac disease. I have both. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. Crohn’s disease can affect any part of the digestive tract but most commonly will effect the terminal end of the small intestine and the beginning of the large bowel. (CCFA.ORG) The inflammatory process can skip areas of the GI tract but also can cause problems in the entire thickness of the bowel wall. This makes the disease difficult to confirm in some people because there can be healthy sections of bowel.  Information about this disease can be found on ccfa.org.

Celiac disease is an autoimmune disorder. People with celiac disease cannot eat gluten because, in affected individuals, the gluten will lead to damage in the small intestine that prevents efficient absorption of nutrients. The only common treatment for this disease is a gluten-free diet. That is not such an easy thing in the US as we depend on wheat and other gluten producing products for much of our food supply. Information about Celiac disease can be found on celiac.org.

I think that having both of these together makes people uncomfortable with me. People, even my family, do not know how to feed me. Eating is such a large part of what is considered social in the US and probably everywhere. Dinner and a movie, popcorn at the movie, and ice cream after that. A date can add up to about 2500 calories and tons of gluten containing products.

People automatically think that I have an excellent diet and that I am always eating healthy. Or that I am on a diet. None of these is true. If you want to know, gluten free products are just as bad or even worse than the normal gluten-containing produced (or over produced) foods in the market. The easiest way to be safe is to eat whole foods. This is true for everyone, not just me.

The next question is always…What do you eat? Well, I eat food. Meat, yes meat, fruit, rice, potatoes, corn, squash, eggplant, spinach, fish, etc. I do not do very well with raw vegetables because of the crohns, but I can steam almost everything. I can make sandwiches out of lettuce or rice cakes, or gluten free waffles. I just have to be a little bit more creative. A gluten free diet is a medical treatment, not a fad.

5K Day

Today is one of two 5K runs for this week. I do not call them races because if I finish, I have won. This run was a challenge with a team. My team was the Dashing Divas. We are three Health Science educators for local community colleges. My fellow teammates do not suffer/enjoy chronic illness, or I am not aware. I am a bit older as well. I realized that I struggle more than both during the race. I am slower and I, well struggle, with some not so dignified issues.

I started my day running to the bathroom. As you may remember,  my infusion day was just two days ago. I think that my infusions may slow me down. I really wanted to stay in bed. I did not have my accounting homework done. I was stressed. So I got up at 0500 and went into my office to finish/start the homework. I am on duty (as a paramedic) for the next two days and I have a ton of work, the last thing I needed was this dumb assignment to finish in a loud rescue/fire station. I finished the homework, this means that I have answers for each questions that are likely completely wrong and I am hoping for some sympathy points. I am packed for the next two days at the station so I do not need to worry about that. But I do start with no less that four RUNS to the bathroom with some scary crohns issues. I am sorry that I did not wear a diaper for today. Yes, I will wear a diaper for runs. I am not always able to control my bowels when I run. This is different from runners poop, I really just have loose stool and sometimes bleeds for the entire time. This does not happen if I am running on my own. Maybe I should not sign up for these things.

During my half marathon last year I started a GI bleed at mile three and my right hip locked at mile ten. I finished and ran over 11 miles of the 13.1. Respectable time for my first but this was the first indication that I am not a typical runner. Others on my half marathon team may not have considered me a runner but I am a runner. I push myself each time and I run regularly. That is a runner.

My time today was under 35 minutes for 5.07K. I was 95th finisher out of 160. We had obstacles. I do NOT like obstacles. I do not like grass, I am always afraid to fall. I am old and clumsy. We had hurdles. I was afraid of those but they turned out to be a trip hazard more than a true hurdle. Those worked out. The tires were not so bad but the crawl thing was terrible. I cannot get my huge butt below those dumb things and I had to crawl in the wet grass for the last two feet.

I was the pace setter on my team. In our case that meant the slowest one. That works for me but I could tell that I struggle to finish more than my teammates. Chronic illness or not, I want to keep running. Next week is the Baltimore Running Festival. I am signed up for the 5K. I do not know if I will do it. Maybe.

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