OK – if you can’t deal with TMI then stop reading now. You have been warned.
I am fucking miserable these days. I am severely constipated. Victoza (my new insulin resistance drug) had some not so lovely gastric side effects. One of them is gas and bloating plus rumbling in the intestines. Sadly it is not resulting in a bowel movement. The extra pain is a lot to take. My GI doctor does not want me to take stuff like Senokot because it is a ‘stimulant’ laxative. However, when I take the non-stimulant laxative, I end up throwing it up. I am also stressed to the max these days. I have had deadline after deadline plus a bunch of extra stuff piled on to my plate.
I am so stressed, I had three anxiety attacks today. I talked myself out of one but lost on the other two. I am so anxious, I have been grinding my teeth and now some of them hurt. My jaw is aching and my shoulders are screaming. I am also exhausted. My workload shows no signs of slowing down and I desperately need a break. I am hoping to take the week of Good Friday off so I can get some much-needed rest. I will forget the relaxation part and just focus on the rest.
I am also having trouble eating. Nothing much appeals to me and I can only eat small amounts. I have been finding meat particularly difficult to get down which is not good for my hemoglobin level. The only thing that is working well for me are Deb’s poppy seed bagels – thankfully for that!
There are some good things going on at home which is a good thing. It makes everything else I have to deal with much easier. Thanks Babe, I love you.
Well, my hemoglobin has risen to an amazing 131! My white blood cell counts were also higher. It may mean that the Imuran is not working as well. It may also be that I am a little healthier with some of the insulin reduced in my blood stream. I have to say that the Victoza side effects are quite strong. It has pretty much killed my appetite. This afternoon I was both nauseous and hungry. I am a little leery about going up to the full dose but I think it will be necessary in order to reduce my insulin levels.
I am working from home for the next 2 days so that will be great so that I can catch up on a bit of rest and get a lot of work done. Once I get out from underneath a big looming deadline I will be far less stressed. Hopefully I can get it all done over the next 2 days.
• So the UN has declared a ‘no-fly’ zone over Libya. What the fuck does that mean? How does a no-fly zone translate into us being part of the US-led coalition ‘Operation Odyssey Down?’ I thought the whole point was to keep Ghadaffi from bombing his own people. Why on earth would we want to bomb the country and cripple what infrastructure there is in Libya. Besides, no matter how hard they try or how good the ‘on the ground intelligence’ is they will hit civilians. What makes it worse is that Canada has now sent our warplanes, which means we will also be bombing the shit out of Libya. What happened to our peacekeeping way of being in the world?
• My fatigue has been of control all weekend. I have been sleeping until 2 in the afternoon. It is absolutely ridiculous. I am trying to figure out how the hell I am supposed to get through the week. I see the doctor on Wednesday, hopefully she will have some answers for me.
• Our ducks are gone from our pond. It is probably not the most delightful place for ducks to be. I am sure that a lot of the grey water from the septic ends up in the drainage ponds!
• I had to help my mom with one of her computers today. I have a Mac but I can log into a Windows virtual machine. I forget what a pain in the ass windows can be. I tried to launch windows live messenger but it wouldn’t let me because I had to download a newer copy. After I did that, the computer then needed to be restarted. When the computer finally came up it took several minutes to get control as it went through all the new windows that it wanted to open up as a result of the new installation. It was very frustrating to say the least. I am not sure how I used to survive in a Windows environment.
Warning: TMI posting
I am still having a rough weekend. My right hip area is still quite sore although not as sore as yesterday. It is making doing basic things quite difficult. My colon has been quite distended as the constipation is back. This means increased levels of pain and generally feeling like crap. I am back to struggling every day and needing a ton of sleep in order to make it through the day.
My doctor actually called me in for a half hour ‘complicated care’ appointment. Apparently, because I was once an ‘insulin dependent’ diabetic when I was on prednisone along with my asthma makes me a ‘complicated case.’ They don’t even factor in my ulcerative colitis – which as my doctor says is very complicated. Anyway, she said the province tells her she has to do these appointments or she is ‘no better than a walk-in clinic.’
It turned out to be a great appointment. I mentioned an article I had seen about thyroid resistance. Basically, like insulin resistance, the cells are resistant to the thyroid hormone. She said she had never heard of that but she decided to do a bunch of tests testing for antibodies to my thyroid, and other thyroid levels. This is fabulous, as we need to try to figure out why I have no metabolism. I eat very little food, most definitely under 1500 calories a day and most days it less. Yet no matter what I do, I don’t lose weight. Plus my body temperature is always 3-4 degrees below normal.
We also addressed the edema I am dealing with. The scar I have from the pyoderma gangrenosum is still swelling, resulting in cellulitis. We also talked about how swollen my colon is and how frustrating I find it. She decided to change one of my medications for insulin resistance, which apparently causes swelling. The new drug she is putting me on also promotes weight loss, which means that maybe I will find some success so I can begin to exercise. I am so frustrated with the combination of low hemoglobin, chronic pain and swelling and my weight which makes it so difficult to do anything. The only down side of this medication is that I have to inject it. I am pretty sure I can handle it.
I am so excited that something may help. I really struggle with my weight issues because even with severe ulcerative colitis I still do not lose much weight. I have cut out almost all processed and junk food. I don’t eat candy or chocolate. Quite frankly, I am sick to death of the whole thing. The only time that happens is when I get super sick and end up in the hospital. We don’t want to do that again anytime soon! Hopefully, we will learn some new things with this round of tests.
I had a busy day. I was late at a meeting. I am tired and still trying to get over the virus from hell. My hemoglobin is down again and I am fatigued again. Plus some other ulcerative colitis related symptoms. So, suffice it to say I am not a happy camper. Things are improving on other fronts so that is good. I am hoping this is just a temporary thing. I am going to relax and watch tv tonight. Catch you all tomorrow.
Tomorrow when I blog, we will be hosting Wandering Coyote! We are all looking forward to it!
This might be one of those TMI posts. So read at your own peril…
Life with a chronic illness is up and down, day by day. I am spiraling down right now. My colon is very swollen making it difficult to move around without lots of pain. It also presses on my bladder making it difficult to urinate. I’m also having bleeding issues again, which explains where all of my hemoglobins are going!
I am not sure what is going on but I have to say that it creates a vicious circle. I want to try to exercise a little bit to strengthen my hip muscles but because of the inflammation it really hurts. Plus any more than 2-3 minutes of walking makes my legs scream because they don’t get enough oxygen because my hemoglobin is too low. I am also feeling fatigued again.
I am hoping it is just all the stress I have been under. However, I fear that I am slipping down into ulcerative colitis hell again. God, I hope I am wrong.
I continue to feel better. It has been very strange to adjust to this new normal. I am feeling better than I have since I was diagnosed in 2005. After years of continuing decline and two hospitalizations, I actually have hope for the future. Who knows if it will hold? There have been times when my colitis has taken a back seat when I have had other issues going on. While I certainly have had a lot of stress, I think (hope) this is different. I have needed a little more sleep than I did a couple of weeks ago. Mostly likely, the extra sleep is because by my hemoglobin dropping from 125 to 119. I have been taking iron everyday so I don’t know why it is dropping. If it is down again next week it means that I am not in remission and that I am bleeding somewhere.
I went to the lab and it was seriously backed up. When my turn finally came, the tech who tried to take my blood missed and moved the needle around for at least a minute before I finally said please stop that really hurts. It is hard going for blood work on a weekly basis when you have bad veins. There are a few of the women there who know me and do a really good job for me. They know my particular needs:
- Check the left arm. You will feel the vein and not see it.
- Tie the tourniquet really tight, over my shirt.
- Don’t use a green needle or you will blow the vein
- I won’t touch cotton, I will have a tissue ready to press
- I don’t want a band-aid as they eat my skin. I will sit and press and leave.
When the tech missed I suggested she grab the one who I know always finds my difficult vein. She did fine and I was out of there in 5 minutes once I saw her.
Going every week and with bad veins, I really have to walk a fine line. I can’t ever be difficult or whine – at least that is the expectation I have of myself. I find if I am relaxed and just let them do their thing with me giving them the information that I know works strikes a nice balance. Being someone with a chronic disease, you come into contact with the medical system a great deal. You come to understand what works for you and you must be able to state what you need in a calm, professional and well-mannered way. I have found that medical professionals appreciate patients who know what works for them; patients who are active participants in their own care.
I know that it is very hard to get an IV into my arm. I have learned though that if the nurse uses a hot, wet compress on the top of my left arm a bunch of veins will pop up that are great for IVs. I had noticed these veins when I was in the shower and I always wondered where they went. I tried this at my last colonoscopy appointment and it worked so well. Now, if the doctor had given me enough sedation at that appointment it would not have been such a horrific experience.
I think the whole point of this particular blog entry is to look at ways those of us with chronic diseases can be partners in our own care. My experience has always been that most doctors and other medical personnel (there are exceptions) like informed patients who are active in their own care. It is even better if you can tell them how to treat you in a better way.
Oh, and my hemoglobin is back down to 120. I am not happy by this development. It explains why I have been feeling more fatigued again. Break out the Palfer CF.