Better Days and taking it slow…

Well, Sweet Readers, I’ve been quite neglectful in updating my blog… I do apologize, but it comes from feeling better and being able to finally have some form of a “normal” life… Let me update on you on what I’ve been doing lately…

My system is not in remission yet, but I can see it on the horizon!  The last appointment I had with my GI, found me tapering off the pred, starting the 6MP again, and taking the last of my anti-biotics… I’ve also increased my probiotics on my own, to see if it would help…  The probiotics are a little pricey, but what you find is, it’s worth it to live a life… I’m starting the 2nd week of my 30MG of pred, and the 30MGs is always the worst for me… This one’s not been too bad, since I now know what to expect… But I’ll be glad to step down to 20…

I’ve also started eating regular food again, although I’ve not stepped yet to the one thing I really miss: salads… I hope to do that in the next week or two… But I’ve found so many new recipes in the meantime, that I’m anxious to try them… I found a company that is supposed to known for making mustard that doesn’t use wheat vinegar!  I bought a bottle yesterday and hope to try it soon… I miss that condiment so much!  Deviled eggs and tuna salad are two things that I dearly miss and hope this new mustard will help with… I’ve also got a batch of home made mustard, made by a very good friend of mine, that I can’t wait try as well!  Imagine going from not being able to eat mustard, to having two choices to choose from!!  What a lucky person I am!

What I still lack right now is energy… I’m trying to rebuild that slowly, but it’s hard!  Especially with it being so cold outside… Who wants to walk outside in 25 degree temps?  LOL  But it’s just so nice to be able at least “sorta” know how your day is going to go… I still take a step back once in a while.. I had a step back about a week ago, when I didn’t pay attention to my body… I thought I could handle what it was telling me, and put myself in a situation where I had no “out”… And I paid for it… Lesson learned and backpack refilled… BUT it’s ok… I lived through it and started anew the next day… And that, sweet readers, is what it’s all about… Starting a new day…

Financially, however, I’m taking a dive… Starting January 1st, my health insurance premiums will be going up by $100 a month… It’s a huge hit to my paycheck, to be sure… So I’m selling the motorcycle, have cut down on many of my small services, and have asked friends to understand that I can’t spend money like I have in the past… It sucks, but it’s all part of what we have to do… I’m lucky enough that I have things to give up in order to make ends meet… There are so many other folks who have already given up so much, and can’t cut any more…  So I cut, and look for other ways to try and help myself financially.. In the meantime I find ways to give to others because gosh knows others have it worse than I do… I’m lucky.. I have a home, a pantry of food, fuzzies, a truck, a job, health insurance and more important than anything else (almost), friends… *smile*

So on we go, Readers!  Onward, upward, vertical and ventilating!  LOL  I hope your Thanksgiving was good and filled with food, friends and family…

Some helpful hints and the storm clouds….

This will be a two-fold post for us today, folks… First, some helpful hints for those who are new to UC… I read somewhere that sleeping on your left side was not the greatest for your heart and actually encouraged colon movement… In experimenting, I found that the latter was definitely true… Currently I tend to have at least one episode a night that can last for 30 minutes to an hour… Once it begins to die down, I’ve found that if I lay back down on my right side, it will allow me to get back to sleep without another episode… If I lay on my left side, however, I will be back up again within about 10 minutes… A professional experiment?  No, but one that worked for me…

Another tidbit, if you’re in an episode, sitting up tends to slow things down… It won’t stop it… But if you’re in a particularly bad bout, trying sitting somewhere with your feet up… It will at least give you some temporary relief and allow a small respite… At night, when I know that my episode has started, instead of getting back into bed, I’ll grab my smartphone, sit in my office chair with my feet up and spend the rest of the episode that way… It makes me more comfortable and seems to ease the discomfort…

And yet, another lesson that I had forgotten but was taught again yesterday… Yes, I am feeling better and more in control…  But NEVER doubt what your body says… I ended up almost having a small accident yesterday because I felt so good that I felt I had time… Thank goodness for my running skills and being the best at the “50 yard butt clench dash” because otherwise I wouldn’t have made it… Lesson?  Don’t get cocky with what your body feels!  LOL

Storm Clouds… Yes, there are a few on the horizon… Thanks to a good friend of mine at work, I discovered that my health insurance premiums were going up $101 a month, starting January 1st… For someone who already has no money in her savings and lives from pay check to pay check literally, this was quite a shock… Instead of getting angry, I spent an hour with another friend (who is MUCH smarter in this area than I) looking over my options and figuring out if I needed to change my health insurance plan… As it turns out, I’m better off staying where I am… But it requires some changes… So, good byes were said to Netflix, my audio book club, and a few other things that I normally subscribe to… I also decided to put my motorcycle up for sale… I hate to do it, as it is such a part of who I am… But when you’re looking at the possibility of not being able to eat or pay your electric bill, things have to go…  My heater was already set to 63, which is where I had it last year, so that I can try and keep my electric bill to a minimum… I checked my cable, DISH, and phone bills for any other areas I could cut funds… I’ve got a plan in place to see about changing how I pay for one of my insurance policies to try and put money back in my pocket, instead of it flying out the door…

Again, this could be an area where I could feel sorry for myself… But as I told my friend, Karen, at least I have those areas to cut and still have a home, food, transportation and care for my fuzzies… Many folks don’t have that flexibility… The upcoming holidays will once again be lean, and probably leaner than they already were in previous years… But again, it’s all about choices… And learning to live with UC, those choices must come first… You learn to lean, bend and go with what you can, or you get run over… So lean I will… Lean, I must… And go I will…

More lessons learned about GIs and UC

Good day Sweet Readers!  I can hardly believe that it’s November already!  When you’re ill with something that takes up almost every minute of every day, it seems the days last forever… But then one day you look back and realize that the summer is gone, and we’re within sight of the winter days… (As I sit here, I’m wearing my favorite “Wicked” hoodie and white/purple footies)  This particular flare started on July 20th and continues to haunt my days here on November 3rd…  3.5 months in and I’m back at square one… This might be a moment to despair, or to be glum… But, yet again, it’s what I’ve learned that keeps me looking forward…

Two Mondays ago, I called my GI and explained that I was once again nowhere with my recovery… I wasn’t able to make it to work; was once again not eating or sleeping and something needed to change… He had me come in the next morning, put me back on prednisone and decided that my 6MP meds weren’t working… He wanted a sample and bloodwork from me, and talked about putting me on Humira… Great, a self-injectable drug… JUST what this needle-phobic gal needs… I once told my then spouse that if I ever became a diabetic, he better learn how to run and inject at the same time because it was the only way I was going to get my insulin… Now my worst nightmare was staring me in the face…  My GI started me on 40 MG of pred, and had me stay home for the week…

I knew by Thursday that something still wasn’t right… Friday morning brought me to a low point… I was dizzy, light headed, the episodes were every 15 to 20 minutes, but my heart-rate was right at 60 which is normal for me… So I knew two things… This was NOT heart related, and it had everything to do with the UC… I contacted my friend, Karen, asking for advice… In talking with her I realized a couple of other things… I had allowed myself to become dehydrated and I wasn’t taking enough pred… I started drinking water, took another 20 MG of pred and within 2 hours felt right as rain… Not drinking enough water is a fault of mine and one I am working on… By this time I had contacted my GI and advised what I’d done… Long story short, they did NOT appreciate me taking more pred without their permission… But as it turns out, there wasn’t anything they could do about it, AND I was right to do so…

So what are my lessons so far?  1) DRINK!!!  I have to keep up on the water… It’s hard sometimes, especially when I get my head into work… But I have to… 2) I need to recognize that no one knows my body like me… If I feel like something isn’t working, do something about it or say so… Another hard lesson because it’s drilled into our heads that the Almighty Doctor knows us… They don’t… They learn, yes… But WE are the owners of these shells and we have to learn to listen to them…  And here comes the next set of lessons…

I turned in the sample and bloodwork on that Friday and waited for the results on Monday… I was also waiting for the scolding about upping my pred, but just as Karen said, it never came… When the results came in Monday, it showed that the original issue of C-Diff had never been resolved… I was still positive for it!!  So, lesson #3) after my round of antibiotics for C-diff, demand a retest!!  Had I been retested back in August, after the first round of meds, we might have found then that the whole core of this issue was not resolved… So I’m now on Vancomycin, 4X a day, for 14 days… According to a drug control agent who works for my Gov’t Agency, that is a very strong drug and not one pulled out by Doctor’s lightly… What I’m thankful for is that I don’t seem to have any side affects from it… Not like I did with the first two sets of drugs they gave me…  I will demand a retest after this round of meds is over… Before I go any further, I want to make sure that the C-diff is gone!  I can’t begin a recovery, if the illness is not dealt with first…

I have an appointment with my GI on Monday and my next step will be to back away from the Humira… He assumed that the 6MP wasn’t working because the C-diff was not dealt with… How could it?  So I’m going to talk to him about giving the 6MP another try, once the C-diff is gone… One reason is because it was working fine until the C-diff, why give up on it?  The other reason?  Money… The 6MP is $20 a month… I don’t know how much the Humira is yet, but the fact that there is an automatic enrollment into a Co-Pay assistance plan when you’re given the prescription ought to tell you something about it… So Lesson 4)?  Don’t be afraid to speak up… If there’s no reason to move to a more expensive drug, say so!  Or at least ask for an explanation… That’s your right!

So as I enter my 2nd week of my antibiotic treatment, I look forward to finally…well… moving forward!!  I’ve been able to eat again, go to work and actually run errands!  I ran several Friday afternoon and felt such a feeling of accomplishment!  I feel better than I have in weeks, have a bit more optimism now and want that to continue…  There are some storm clouds on the horizon and I’ll deal with that in my next blog… But for now, my hoodie, footies and I are warm, out of pain, comfortable and enjoying some peace… And after all, is that what life is about??