Bits and Pieces

Well, once again I've been a bad blogger - it's been almost a week since my last post and I haven't participated in my Wordless Wednesday or Photo Hunt games in several weeks. I've been dealing with my own health issues and those of my mom, but it is no excuse, I just need to be more disciplined.

I had a comment from a reader in response to a post from back in October about CVS drug stores carrying the magazine Fibromyalgia Aware - she hasn't been able to find it in her store and when she asked the staff they knew nothing about it. I directed her to the 800 number for CVS as well to FMAWARE.org (the publishers), but I am wondering if anyone else has had a problem getting a copy. I bought my Fall issue as soon as they went on the stands, but I am wondering since it is a quarterly publication if they only ordered a small batch to see how sales would be. If anyone else has any experience with this, good or bad, and could share it, I would appreciate feedback. Thanks!

My mom had her colonoscopy last Thursday. Other than enduring the night before with the prep, things went pretty well. At this moment the C-Diff appears to be gone (although we've been told that before only to have it reappear!). they took some biopsies to make sure they aren't missing anything important, and when she goes back in a few weeks we should have a more complete answer as to what has been going on with her. I want to thank everyone who has asked about her and also sent prayers and good wishes.

I have an appointment on Friday with the urologist to see if there is anything to this mild nephritis finding on my CAT scan. My GYN is concerned that with my history of endometriosis and adhesions, there is the possibility of an adhesion causing a kink or blockage, which could cause nephritis. Of course, never being able to be the simple patient, I am allergic to contrasts and dyes needed to do studies, so we will have to see what the urologist recommends as the next step and proceed from there.

I have been in a "if I have to see one more doctor I am going to scream" mood, so I have put off getting in touch with several other specialists I need to see. I know it isn't a long term solution, I just want to get through the holidays and my birthday without having 2 or more appointments each day! Between mom and I it feels like it is all we ever do anymore.

We did have a pleasant day on Sunday. After Mass we headed over to a nursery that does a lot of decorating and such for Christmas. It is called Hicks and I hadn't been there since I was a little girl. They have a small area with animatronics that you walk you through, different Christmas scenes. It was fun to watch the children as they looked and "oohed and aahed" at Santa or snowmen or penguins. Many parents had their kids dressed up because there are lots of good places to get those all important Christmas card photos. My mother and I both enjoyed watching the little ones enjoy themselves. There was a quartet set up in the middle of the greenhouse and they were playing Christmas songs. They had brought along all sorts of bells that the kids could pick up and play along with. What fun to watch a little toddler shaking the bells and singing "Frosty" or "Jingle Bells".

We came home and had a bite to eat before heading out to a local parish for "Lessons and Carols". The choir at St. Anne's in Garden City is amazing and it was so nice to hear the scripture readings and then the songs. We met up with some friends there and it was fun to be together and celebrate the real meaning of the holiday. After dinner we headed over to the Rexcorp tree and ice rink. For those of you not familiar with the area, it is Long Islands answer to Rockefeller Center. The tree is even bigger than the one in NYC and there is an ice skating rink as well. They decorate the inside of the office buildings, although this year that part was rather disappointing. It was a cold night, but we enjoyed watching the skaters and looking at the gorgeous tree. We came home in time to catch HGTV's special on Christmas windows 2008. I was walking to shut off the lights and caught my little toe on the coffee table and broke it! OUCH!! I am still hurting and limping. It was so stupid, but these things happen. Except for that, it was a nice day.

I am still having a lot of pain in what I originally thought was my tooth, but it turns out to be my ligament in my jaw. There is either an infection or perhaps a crack in a tooth. My dentist had me do a round of antibiotics, but I am still really hurting. It never ends when you have autoimmune problems, one thing just leads to another. I am also slowly decreasing my dose of hydrocortisone, so I have had some issues with that as well.

Overall it has been such a good holiday season compared to last year that I can't complain even with all that is going on. I encourage you all to find fun, free and meaningful things to do that will bring you into the true reason for the season. Today we went to the local elementary school for their holiday concert. Seeing those sweet little ones singing, playing instruments and enjoying themselves really gave my spirits a lift and brought me back to the wonder of being a kid again. Be grateful for all you do have in these tough economic times (my landlord finally got us a new stove - YEA!!!), and pray for those who aren't as fortunate. Right now there are so many good ways to help, even just offering to drop food off if you can't afford to donate a whole meal, sending a card to soldier in Iraq or Afghanistan or at Walter Reed as I had posted about earlier. You don't have to spend a lot to help. Heck, give someone a genuine compliment, we are all so harried and hurried this time of year it will make their day!

Thanks for reading my blog and for caring about me and my family. I will post some pictures of the tree so you can all see what that looked like. This weekend I am due to go into NYC to see the Rockefeller Center tree and the Christmas windows. If my toe allows it, I plan to get as many pictures as possible and share them here for those of you who don't live close enough to get to see them in person!

Another Lesson In Thankfulness

I am posting the following which I received in an e-mail, I have no idea who the author is, so if anyone knows, please get in touch so I can credit the right person!

Be thankful that you don't already have everything you desire.
If you did, what would there be to look forward to?

Be thankful when you don't know something,
for it gives you the opportunity to learn.

Be thankful for the difficult times.
During those times you grow.

Be thankful for your limitations,
because they give you opportunities for improvement.

Be thankful for each new challenge,
because it will build your strength and character.

Be thankful for your mistakes.
They will teach you valuable lessons.

Be thankful when you're tired and weary,
because it means you've made a difference.

It's easy to be thankful for the good things.

A life of rich fulfillment comes to those who

are also thankful for the setbacks.

Gratitude can turn a negative into a positive.

Find a way to be thankful for your troubles,

and they can become your blessings...

This is true for everyone, but especially important to remember when you battle a chronic illness. I know that I have learned so much through this journey that I might never have learned, and although I don't enjoy being ill, there are positive things that have come from it. I have met some wonderful people, both on-line and in "real" life. I have learned about talents and strengths I possess that I never knew I had. I have let go of perfectionism as my ideal.

I am heading into a challenging week. I have several doctors appointments, which have me worried. My mother has had continuing difficulties with her health since developing C-Diff back in August in the hospital. They are doing a colonoscopy on her on Thursday morning, so we have the prep to get through on Wednesday and then her test. I pray they can figure out what is wrong so she can get some relief. I have a new specialist on Friday for a possible problem with my kidneys. It never ends. So I need to re-read my own post and learn to take the challenges and change them into growing experiences! That doesn't mean I won't ask for your prayers in the meantime though. . .

Is It Just ME?

Something that has come up over and over again during all my time with chronic illness is how to handle scheduling when your life isn't always predictable. I am finding it an issue once again, in the personal realm of things this time.

I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.

I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.

It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.

Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?

The Caregiver Role

As I have mentioned before, I live with my 75 year old mother, which is a blessing for us both. Shortly before I began blogging, my mother had been hospitalized for 10 days and had developed C. difficile, an infection in her intestines, while in the hospital. Well, the C. diff has returned. This is bad for mom, but also for me. With my multiple illnesses, and especially being on hydrocortisone therapy, I am very vulnerable to catching infections. When mom had this infection the first time, I started to manifest symptoms of the illness and was put on an antibiotics prophylactically because the gastroenterologist was concerned about the possible effect to me due to my inability to tolerate the antibiotics that normally treat this infection, as well as the fact that I take pain medications that slow the movement in my bowel down, making the bug live longer in my system.

The other wonderful thing about C. diff is that the only thing that kills it is bleach. You can't use antibacterial wipes to clean up in the bathroom or Purell on your hands. Since mom and I share a bathroom, that means constant cleaning with bleach, as well as vigorous hand washing with hot water and soap for no less than 30 seconds each time you use the restroom. Well, at home that isn't so hard to do, but try that in a public restroom. Many times you can't even find soap, let alone hot water or something to dry your hands on. Even at home, there is the joy of standing there in the middle of night, trying not to wake up while you wait for the water to get warm and you start to clean and count.

My poor mom has the worst of it of course, but it is another reminder that I cannot ever just be caregiver, I have to always worry about how things affect my own health. I need to try to stay healthy so I can care for mom. She feels guilty exposing me to an infection she didn't cause. I guess the apple really doesn't fall far from the tree in this case!

I am blessed, to still have my mother and to be able to help care for her as she has done for me for my whole life. Still, it doesn't make it easy to handle the extra cleaning and the worry, but given the alternative I am will happily deal with both.