Saturday, September 29, 2012

Art, Abilities, and Collage

I love the idea of mixed media on a canvas. Actually, I love any kind of art. I believe everyone is capable of making art but it takes practice and I need more practice. I’m getting into this venue late in life.

 I've done it in art journals; the things I have done have turned out OK. Hey, Van Gogh I am not. However, I am improving with practice. At the moment, I have no idea what possessed me to attempt to put mixed media on canvas. But in a moment of lunacy, I started two days ago. 

I prepared two canvases with gesso. I found a poem of mine that I wanted to incorporate into the piece of art that I was going to make. I decided I would include the face of a clock in the piece because the poem talks about taking things one second at a time, one moment at a time, etc… I found the perfect set of Roman Numerals to use in the piece and I printed them out.

I carefully placed them with the Mod Podge on the canvas and left it overnight to dry. When I got up yesterday morning, the things I Mod Podged so carefully hadn’t adhered to the gesso correctly. Do you know what a pain it is to peel off half stuff on pieces of paper off a canvas? It is horrid. Then I had to sand down and gesso again to begin the process anew.

I got half way into the project (with a new layout of course) and I hate the way the paint adheres or should I say doesn’t adhere to the canvas. If you use the acrylic paints like a watercolor wash it looks great but every cut of the paper shows. ARGGGHHH!

Well, at least I learned some valuable lessons about working with decoupage on canvas. And no, I did not take a picture so you can see this shameful piece of unmitigated failure. I also learned that I need a protractor (or to find which one of my adult kids ran off with mine), a yard stick and some new paints. So I will start over this time with a different brand of Mod Podge like glue and see what happens. With luck I’ll let you see the picture. Carpe Diem ... Carpe Canvas

Friday, September 28, 2012

It isn't enough to join a gym; you actually have to go

Does anybody really want to go to the gym, do they; do they really? I think if they were honest with themselves the answer would be a big fat NO! However, I’m certain that with joining a gym the intention of using the gym is actually there. So it isn't enough to join a gym; you actually have to go.

It was about a week ago that I joined the gym in Ephrata. Today was the first feasible day that I could go. So since my motivation for the day was that I paid good money for a gym member (because who in their right mind actually wants to exercise), I best go or my husband will be mad for wasting money.

I know that the real reason behind joining the gym is the same as it was.  My motivation to join the gym was and is to get healthier and to delay total knee replace. I know when I went to physical therapy for my knees; I experienced less pain and had more stamina. I want to get this back. I also want to tone up since I have lost so much weight. I’m now close to a 100 pound weight loss and I don’t want to look like a lumpy bad of mashed potatoes when I’m done losing all the weight I want to lose. 

Surprise, doing the exercises that I previously done at physical therapy in an “endless pool” was much nicer in a real pool. I was a very nice experience. The pool area wasn’t nearly as humid as it was on the day that I toured the place. So I physically could breathe easier (Asthma, don’t you know). 

There were two things I didn’t like about the gym. First off the area around the pool was tile and there for very slick. I need to get crocs or some other type of shoes like them so I don’t fall and break something that hasn’t already been broken or previously damaged. With being on Methotrexate due to Mixed Connective Tissue Disease, healing is a bit of a challenge (as it is when you have most chronic illnesses). Second, the handicapped changing room is a co-ed changing room.  Yes, they have curtained areas but I don’t feel comfortable changing in there and the women’s changing room was way down on the deep end of the pool and it was too slippery to get there safely. I choose the non-option which was changing in a real door separate room handicapped bathroom.  Next time I’ll bring a croc and go to the women’s changing area.


If you haven't discovered , please visit their site. They encourage the sharing of their awesome cartoons; they have some really funny ones. Hope you enjoy their site.

Thursday, September 27, 2012

Living with Multiple Illnesses and Hope

I wanted to get this done long before September 16 (the beginning of Chronic Invisible Illness Week).Why? Because I have to make the most of the days when I feel half decent. I even had most of this written but I just didn't even get as far as the first proof read.

Far to many of my days seem lost due to migraines,or pain running rampant through my body. Many days my arms, elbows and hands refuse to cooperate. Today is the second day in a row I have sliced my fingers instead of the vegetables I was chopping. 

All encompassing fatigue frequently steals my days, leaving me not only feeling like a bedraggled dish rag, but  also spending the day in bed. So learning planning ahead is one of the lessons I've learned due to my multiple illnesses. 

To be honest, there is no way I'd make it on my own with these illnesses. I have a supportive family, some wonderful friends, a fantastic therapist. But in the midst of my pain and suffering their is only one that fully understands me completely. That is because He made me; He made me just the way I am. He knew in advance everything I would ever do, and He still died for me. I don't know why He hasn't healed me this side of heaven, and that is ok. He has His reasons. All I know is through it all He is with me.  He is the one I can call on at any day or hour and He will always be there for me, even when I don't feel it. When we don't feel it, it is called walking by faith. 

The week of Invisible Illnesses was about Visible Hope. That week has come and gone. Unfortunately, my illnesses have not, but then again neither has my faith and hope left either. Some may say that not only are my illnesses invisible, but so is my God. To answer that I'll use the words Billy Graham is famous for saying, "I’ve seen the effects of the wind, but I’ve never seen the wind." I too have seen the effects of God in my life and therefore He is my visible hope. I know He is there even when I'm in pain. 

Please enjoy the following YouTube Video sung by Mandisa: He Is With You

Friday, September 21, 2012

Gym Suit, Swim Suits... And Yucky Exercise for the Chronically Ill

Yes, I'm back on one of my least favorite subjects. I didn't know this would rise to my second least favorite subject. Well, that wasn't until I got scheduled for the nasty colonoscopy on Oct 8th; but (not pun intended).

If you read my earlier post on exercise you know how horrid memories of gym class haunt my mind. I still have visions of ill fitting gym suits which give me nightmares. Do you remember the ones I mean. They were retched all in one things, that looked like shorts attached to shirts and had a zipper running up  back. Mine had royal blue bottoms with a stripped top. Talk about poor taste, one size fits none, and is not flattering on all (not even on the cheerleaders).

Anyway, I took the big step today and jointed the Ephrata Rec center. So I will be exchanging my ill-fitting gym suit of days gone by for a plus size swim suit. No it will no be a plus size bikini. In my opinion such things are obscene - or should I say, "should not be seen, at least not on me".
However I hope my plus size swim suit is one that I hope to out slim.

You see I've already gone down several sizes and I have several more to go. But the best way to get healthy is through the healthy lifestyle changes I've already made (no artificial dye, colors, preservatives, more organic foods, and leaner food choices) and add exercise. I have also gotten rid of doctors that I don't feel are giving me adequate care (I've mentioned that before).

All I did today was sign the papers at the Rec center; however, it is a start. Next time I will start water walking. Will I build up my stamina and then I will start working out on building strength on some of the weight machines.

As Randy Glasbergen says in one of his fantastic cartoons: "What fits your busy schedule better, exercising one hour a day or being dead 24 hours a day".  

Thursday, September 20, 2012

Colonoscopy... You Want to Stick What, Where!


Time for a Stick Up
My birthday is fast approaching and this old gal will be 52. That is both good and bad news; the good news is I have made it to basically 52 years of age on this side of the sod. Now for the bad news; is it is time for a stick up. Yup, you guessed it; the doctor says it is time of a colonoscopy.
The doctor called it a “surveillance colonoscopy”. What are they going to do; send a miniature spy team up there and take pictures of incriminating evidence? Geez! Evening a screening test at this point sounds bad. Picture Miss Suzy’s screen test; let’s just say I don’t think my hind side is not my best side for a screen test. To me this just feels like a robbery and somebody yelled, “Stick ‘um up”.
Too Many Doctors So What’s One More - Gastroenterologist
Normally when your Internist/family doctor orders a colonoscopy, it means going to see a gastroenterologist. Basically, this is a doctor that enjoys looking down mouths and into your stomach or up peoples colons through special tubes all day long. It is a wonder these people can look people in the eye afterwards
There really isn’t a problem with seeing a gastroenterologist; however, what happens if you cancer is found during the “stick up”.  Then you would need to see either a general surgeon or a colorectal surgeon. If you have as many doctors as I do, the very thought of adding possibly two more makes me sick. So I found a colorectal surgeon that also does colonoscopies.
The Basics
I have had an upper endoscopy before (this is where they look down your throat and into your stomach with at tube which requires you not to eat after midnight). From that I learned that the actual procedure of having an enormous tube shoved down an orifice doesn’t hurt do to the anesthesia. As a matter of fact, most people have no memory of the actually procedure of either an upper endoscopy or colonoscopy. However, the worst thing able a colonoscopy is the prep. 
They say, “What goes up must go down”. Well I say, “What when in must come out”. Hence the principle of the prep of a colonoscopy, in doctor’s terms that will say to you is that “The prep is used to clean you out. If the 
prep isn’t done as directed and you aren’t completely cleaned out, both the prep and the procedure will need to be rescheduled”. I don’t know about you but after you hear about the prep (if you haven’t heard urban folklore already) there is NO WAY I’m repeating it).
The Prep
I’m not going into great details as each doctor has his own “cocktail drink” or version of liquid laxatives or the 32 pill version that was approved by the FDA that you can take to clean you out. If you are poor or have kidney problems the bad news is the pill option is out for you. You will be stuck the “cocktail”.  I’ve heard tails that it tastes horrible. I have no point of reference but you can either drink a ½ gallon (the cheaper option) or a quart of liquid (an expensive option that might not do the job). The choice and risk is up to you. Follow the instructions to the letter and pray everything comes out ok in the end. Pun intended.
I’ll let you know how this …went… when I have a point of reference. My only laughing point is that later in the month of October, I’ll get to laugh at my husband as he has to go through the same thing. He’ll be turning 52 too. 

     The above video is from YouTube and called Lookin Up My Back Door

*Thanks Carla Barrett for the great chicken cartoon

Monday, September 17, 2012

What to Do When Overwhelmed By Exhaustion

CFS = Chronic Fatigue Syndrome*

What should you do when you are overwhelmed by exhaustion? STOP! Stop doing. But stop doing    WHAT? Whatever it is that you are doing, duh... It sounds like a no-brainer, doesn't it? But with the reality of life such as cooking, cleaning, taking care of the house, the dogs, and living the life of luxury of a disabled person and not working, HA (Had you going for a moment there didn't I. If you believe that, I have a bridge in Brooklyn I'd like to sell you). Something has to give. 

The first thing you need to do is rest whenever possible. Next if you aren't use to prioritizing now is the time to start. First on that list should be REST. If you don't rest optionally now and force yourself to keep going, your chronic illnesses will force you into a mandatory rest or heaven forbid a permanent rest in peace. Understand that this may even mean missing things you had really wanted to do and looked forward too. It stinks; you can throw a tantrum if you want. But I'd suggest you don't. It takes too much energy. 

Simply tasks as much as possible and/or delegate them. Can your kids safely make dinner while you supervise? Must your dinner be served on real plates when paper would do? Face it, it is either going to be the paper plates that turn into fertilizer for the earth or you. What's it going to be? Frankly, I'm too young to die; therefore, at my house it is often paper plates and takeout meals. Or it might be meals I prepared on "good" days.

Finally, it is important to make peace with the fact that you can't do everything. Not even healthy people can. We all have just 24 hours in a day. So rather than issuing a statement about the fact that I'm so sorry I haven't been blogging for X number of days, I'll simply tell you I was exhausted by life. I'm sure you've all had days, weeks, months, and unfortunately for some of you - years like that. I wish all of us a refreshing rest.

*The cartoon is from a blog called My Burn Out Thing. Megan Hills is the fabulous Cartoonist.

Tuesday, September 11, 2012

Doctor Visit...More Bang for the Buck


Medical personnel are the pickiest patients I know. Being a perfectionist and a RN, I’m the pickiest patient I know. I have a zero tolerance policy, zero tolerance against sloppy medicine. I do understand that people do make mistakes and are human. Although at times, I’m anything but human. Just ask my husband! But it is the sloppy, lazy, type of mistakes which are the types of things I don’t put up with.

So you must know that I have a primo set of doctors that I go to see. When you hear my list of what makes for a great doctor you’ll know that I have high standards. Some would say they are impossible standards; but, then those are the ones that are no longer my dogs doctors. There are some great doctors on my list. When I find them, I let my insurance companies know who the  truly excellent doctors are and which ones stink. Do they care? In a word, YES. Will it force some doctors to change the way they practice medicine? Yes, I've seen it happen. FYI- For a while I worked as a RN in an insurance company; but that is another story...

My doctors must be an excellent:  diagnostician, have a fantastic bedside manner, be compassionate but tell it like it is, be up on the latest innovations in their specialty or know who to refer you to who is, be completely honest, treat you as an equal, never talk down to you, explain things in terms you understand, allow time for questions, congratulate you when you meet jointly agreed on health care goals (i.e. lowered cholesterol levels, positive lifestyle changes, etc.) and never act like they are in a rush. My doctor must also walk on water and make me the ideal body weight with a wink of his eye. See I want it all. Darn, I still haven't found one that can do the last two. There just isn't one on the face of this earth!

See, I do expect it all a great deal from my doctors but then I know what doctors expect of me. They expect me to come prepared. They expect a concise reason as to why I am seeing them that day. As a diabetic, I am expected to be able to tell them what my blood sugars have been running and what it is that day. I also have asthma; I am expected to know my peak flow and since I have a pulse oximeter, I also tell them what it is reading that day.  If I am symptomatic of “something” like the flu, they want the low down on when it started, and the nitty-gritty on all the symptoms, duration of how long things have been going on and any other information (cough, drainage, discharge, hot and cold running green snot…). I jot down any questions I have I order of priority (so if time is short I know which ones must get asked and what can wait or be asked later). I bring a list of all my prescriptions, dosages, list of which ones need renewed, pharmacy phone and fax number (the office can handle this at their leisure if they are running behind). 

Speaking of behind (no not mine, it is easy enough to spot), call the office prior to going to your appointment and ask if they are running behind. There is no point in waiting in an office if the doctor is running behind or if the computers are down and they were going to call you to cancel. It is always better to know before you go. If they are, tell them that you will be coming in x-amount of time later since they are running behind or they will give you a primo appointment at another time. Sometimes, the office will get so use to your doing this that they will let you know if this is an issue. They may even call you earlier in the month  if there is a cancellation and they can get you in sooner just as a nicety or fit you in when you really need to be seen . 

I am a respecter of my doctor’s time. When I am getting to know the office, I find out what the length of time is allotted for an appointment. If they ask why, I explain that I want to be a respecter of the doctor’s valuable time. I watch the clock and try to make certain I’m not going over my allotted time if at all possible. This keeps the appointment professional on both ends. Because I respect my doctor’s time, my time is respected too. There have been times when we have finished early and taken a moment or two and gotten to know each other a bit better. This helps the overall relationship be better for the both of us.

Invisible Illness...But Feeling the Pain

Some of the illnesses I have would be considered invisible illnesses. Nobody can "see" the pain I'm in or you are in. They can only see the manifestations of that pain such as high blood pressure, grimacing, limping as when walking but they can't really see what we are feeling. Those that don't have illnesses don't understand how it can effect every part of your life from how you view yourself to your world view. It is so important for me to try to hold on to hope and not allow illness to define me. In other words, I am a person with chronic illnesses the chronic illness are not who I am.  

Although no one can fully understand another's illness or pain be it from Chronic Migraine, Fibromyaglia, or Mixed Connective Tissue Disease, etc  there is a bond in knowing that you aren't alone in a chronic illness. Others are fighting against chronic illness and we can lean a bit on each other and on our Creator.  

I found the following video on a link from last years Invisible Illness Week 2011. I hope you enjoy it as much as I did the creator of the video said the following:

“Having an illness that effects every aspect of your life, relationships and how you view the world has been an eye-opening experience for me personally. After meeting with other people who went through similar trials, my heart broke. I know that some people just need to be HEARD. (REALLY HEARD!) I created this video – as an affirmation and an encouragement for others. I know that through trials, God has a plan to use them for good and that is hope to hold onto – through the pain." 

Monday, September 10, 2012

Dreaming of Health

While looking for items for Chronic Invisible Illness Awareness Week I found a rather different song. It isn't a song I'd listen to on a regular basis. It is done in a style that I'm not really accustom to. However, the more I listen to it the more it grows on me. The singer, Dr Franky Dolan, sings acapella. The message of the song is lovely. Dream on.

What to Do When You Aren't Up to Making Art Due to Illness

This week I still haven't been able to been able to get around well. If you recall, I received Synvisc One injections in both knees about a week ago. I am getting better daily; however, in the duration my sleep has been affected. 

This means I don’t have energy. Zippo, nada, none, running on empty… 
I couldn’t get out my art supplies if I wanted to.

My art/fabric room does double duty, (it is a space on the second floor). It is a place for me to relax. It is a place where art supplies are and are stowed out of site. Although this keeps the room eye pleasing and relaxing, it makes it a bit more effort to get the supplies out for any  major art or fabric art projects. 

I’ve learned to keep a sketch pad, notebook, pencils, erasers, and pencil sharpener in a decorative box in reach. I have a box for scrapes of paper that serve as inspiration.  The sketch pad is great for low energy days. But what do I do on no energy days?

In the past, I’d flip through magazines and earmark them to rip out on a better day. However, I made a great discovery over the weekend. It is called Pinterest.

Pinterest is a virtual pin-board. It lets you post and share beautiful things you find on the web. You can also browse other peoples “boards” to get inspiration. I have found some interesting artwork done with paint-chips that looks OK but would look so much better in a different media. So for inspiration, it is a great place to haunt for inspiration when you don’t feel good. 

Friday, September 7, 2012

Exercise, Autoimmune or Chronic Diseases, Pain.

Exercise. Even the word makes me cringe. It brings back memories of ill-fitting gym suits, smelly locker rooms, and usually being the last one picked for any team sport (except volleyball). I was definitely not a jock. So I hate it when doctors tell you to exercise.


I wonder if doctors understand what they are asking the First if you have an autoimmune or chronic disease, you often don't have energy to spare. Second these diseases usually are very painful. I am a good example of this. If I am just speaking about some of the diseases I have going on like Mixed Connective Tissue Disease, Osteoarthritis, and Chronic Migraine, I lack energy and am in pain. Exercise may help in the long run but it is going to be painful in the process. At times, it is so painful I can't get out of a chair. So what is a girl suppose to do?

It starts by recognizing the importance of exercise in everyone's life. Boy, do I hate to admit this. Next, I know that I can't safely exercise on my own without the risk of injury. I also know that because of my various health conditions, it is necessary to get clearance from my general internal medicine physician prior to starting any fitness type of program.

I see my doctor on Tuesday and will make certain I am healthy enough to begin a fitness program (oh, that sounds so much better than the dreaded word exercise). Then I will ask him if he thinks I need to be supervised by a physical therapist or if I can go to a regular gym. If I need a physical therapist, I'll let him help me with my routine. Otherwise, I go to a gym and start off with a trainer so I don't injury myself and make matters worse.

The goal in the fitness program isn't to look buff or look like a fashion model. The goal is to get healthier and ultimately decrease pain. If this can happen...It will be a good thing.

The fabulous cartoon is from the following website:

Tuesday, September 4, 2012

Things I Wasn't Told About Synvisc One

As I said yesterday, there is a world of difference between Synvisc (a series of 3 injections) and Synvisc One (as the name implies, the total amount of the medication, 90 ml is given at one time instead of split over the three injections). I went for my weekly Methotrexate injection (for Mixed Connective Tissue Disease) today and had a chance to talk with one of the nurses, at the small satellite office, in Manheim. I expressed how poorly I felt I was doing with the Synvisc One. The nurse there took the time to give me some valuable information about Synvisc One that I should have had prior to getting the shot this past Friday.   

Don't get me wrong, I was told before the shot about allergic reactions but that was about it. This is what the nurse told that i wish I had known sooner.

You will feel much worse before you begin to feel better.

Ice your knees (20 minutes on 20 minutes off) to prevent swelling (this is especially important the first 24-48 hours) and minimize pain.

Stay off your feet as much as possible.

I can take up to a month for Synvisc One to help decrease pain.

You might not want to get both knees injected at the same time when using Synvisc One. 

Excessive pain and swelling is more common if this a repeated injection (i.e. you have had either Synvisc or Synvisc One in the past)

I would add a few things to this list to keep in mind for the future. I got this shot 4 days ago and I am still not walking well. Count on being laid up for at least 5 days; if you feel better prior to this, fantastic. Have an adequate supply of pain medication on hand. Talk to your doctor about what pain medication you should use especially if you have a complicated medical history. Please keep in mind that if you have kidney issues NSAIDS (non steroidal anti-inflammatory drugs) shouldn't be used without the doctor's OK.

Monday, September 3, 2012

Sweet Relief? Synvisc One, Osteoarthritis, Mixed Connective Tissue Disease

Synvisc One is new to me. The idea of one shot instead of the series of 3 shots of Synvisc, that I had in the past and LOVED, is very appealing. The lurking question is but is it really, when I think about it. When I got the Synvisc (series of 3), I had trouble with stiffness and pressure in my knee for 3 days after the each one of the injections. It was tolerable but very difficult to ambulate. I went from using my cane back to using a walker for those couple of days.

Synvisc and Synvisc One are used for the treatment Osteoarthritis, and for me, the treatment of both the Osteoarthritis and the Mixed Connective Tissue Disease. With Synvisc, the doctor would inject 30 cc of the medication with each of the 3 injections (3 x 30 = 90 cc total). With Synvisc One, the doctor injects me with 90 cc of medication, all at once. Once I understood this concept, I didn't think this was going to end well.

My doctor ordered the Synvisc (the series of 3); the insurance company would only approve the Synvisc One. I can understand they don't want the risk of three injections into the bone space and the potential for Osteomyelitis (very serious bone infection) that may occur. And frankly, I don't want that to happen either; but the risk is there with any injection into the bone space.

I got the Synvisc One injection on Friday. By Friday evening I was using a walker instead of cane. Saturday, I gradually got worse. I was feeling a lot of pain, huge amounts pressure and stiffness. Doctors tend to call pain pressure because technically you can't feel pain and pressure at the same time (the same nerve carries that sensation). The doctors called pain pressure when I was in labour. when I Well, I wasn't feeling just a little pressure; I was feeling a 10 out of 10 pressure. I can best describe the pressure I was and am currently feeling as I felt as if I was going to give birth through my kneecaps. Some relief, right?

Oh, I am exaggerating a bit. My left knee is actually usable at this point and I no longer feel like someone should be hunting for a stopwatch to time contractions; however, the right knee is not a happy camper. I still need help getting out of a chair and I am wondering why they don't have fancy wheelchair stores in malls....May be it will be better tomorrow.