Friday, September 30, 2011

Feeling Kinda Giddy!

My fall mantle decorations
Do I dare say it? Do I dare to believe that this wonderful reprieve from the oppressive ra will last? Well, I sure hope so and in the meantime I am going to use this small window of opportunity to its fullest.

I am giddy with it all. It seems like forever since I have had any stretch at all (even a day lately) without ra reminding me that it is tagging right along with me. More like dragging right along with me and add about a thousand pound weight to it also. But for whatever reason, my ra has decided to take a vacation and I am so happy.

So, what shall I do with this reprieve? Well, so far I went out to my favorite little goody spots for the past two days and I am hoping that this mild ra stretch will get me through this weekend as I have scheduled a garage sale. I HATE that word! Schedule that is. For some reason whenever I have to schedule something I am forced to remember that I might not be able to go through with the scheduled plans or event. And personally I hate breaking plans. And this particular event can't be cancelled that easily. I suppose on Saturday morning at about 4am I could repost on Craigslist that I have cancelled (and I may just have to do that) but I have plan B in place for this event. My wonderful 20 year old has offered to join the team. If you are wondering where Mr. P has wondered off to (my dear hubby), he is out and about visiting with relatives and won't be back in time for this fall event.

Now you may just remember that I have this Bucket List I am working on and this garage sale is for the next item on my Bucket List.  I so want to try and travel abroad one more time (I only went one other time to England...hello Stachys if you are reading this) and go with my daughter before she needs to head off into the great blue yonder of life after college graduation.  And that item is one big ticket item as far as our budget tends to go.  We have been stashing as much cash as we can over the past couple of years in the hopes of making this bucket list item a reality.

So wish me luck ( I will need it and that is for sure) and sprinkle lots of get rich fairy dust on our upcoming yard sale. Yes, I know. I know. Rome wasn't built in a day and getting there won't happen on one yard sale either but then again, I won't know if I don't try.

I am hanging my get rich fairy conspicuously so that she can continue to bring me good luck and perhaps good fortune too.

Monday, September 26, 2011

My Happy Tool Kit includes...Welcome to My Town

As you know by now, I love to take pictures. I am certain that in my own way I feel like I can express myself with pictures and since I can't draw or paint, the world is my canvas through the lens.  One of my favorite distractions from ra (or anything for that matter) is to get my camera and head out. Out will depend on just how much I can handle on that particular day and sometimes I am lucky enough to get further than my own back yard.

I have been known to be found in one of my favorite places which is downtown Wilmington. It not only has a wealth of history but I find a sense of humor there as well.  From the beautiful downtown waterfront
to the majestic steeples of our well known churches,

to the humor in the merchants advertising,

Wilmington has much to offer and not just to the tourist but the resident as well.  One can take a trolley tour of my hometown

or a boat tour of the river rich in history.

And if one has the energy, a lovely walking tour can be done in under two hours.  There is the famous Bellamy Mansion,

the USS North Carolina Battleship,

the many lovely shops at the historical Cotton Exchange

and, least we not forget, Thalian Hall.

photo from:

Indeed, downtown Wilmington can distract my mind and also my stomach with its wonderful array of foods. Ahhhh....the many, many restaurants and lovely morsels at every turn. Most definitely, one of my favorite tools that I use regularly when I venture out for a Fridate.

I can only hope that your hometown makes you as joyful as mine makes me. I would love to know what you do in your hometown to keep your mind alive,  off of your ra aches and pains, and happy.

More reading on my blog...
My Happy Tool Kit
Happy Tool Kit Alert

Friday, September 23, 2011

Kissing Cousins of RA

A very dear friend of mine called me the other day to say that her sister was recently diagnosed with hepatitis C.  Immediately I thought of a blood transfusion as the cause. Boy, did I have something to learn. She in fact was diagnosed with autoimmune hepatitis. What in the world is this?

And that was the inspiration for this post. The longer I am blogging, the more I learn and the more I have to learn about what seems like to me, the many autoimmune illnesses that are kissing cousins of ra.  Yes, I know, what a lovely thought.  More things to possibly have to worry about.  But I am putting this information out there because so many of us have so many symptoms that just don't quite fit under that tidy one diagnoses we were given.

So here goes! Here are some of the kissing cousins of ra...

Medline Plus gives us the following examples of (kissing cousins of ra) autoimmune diseases:

And if that isn't enough to digest, here are a few more that I recently found out about!
I have no doubt I have missed a few of our cousins out there. So if you know of any others, ask them to join this dysfunctional family through a comment.

Sunday, September 18, 2011

Fall Festival of Blogs

It's that time of year again! The pumpkin spice candle is lit, the leaves have begun to change color and I have decided to have another blog party!

So come on in, browse awhile on the wonderful new blogs I have grown to enjoy.  Perhaps you can leave a comment or two so they know you have visited.

I hope you enjoy them as much as I do...

Does It Get Any Easier?

 This morning started off like every other morning. Just getting out of bed and coming downstairs did me in. The pain and stiffness upon waking on this chilly morning makes it clear that I am going to need extra time to get through morning routines and get kids ready and off to school. The problem is that there is no extra time, I spent that lying in bed waiting for my morning medication to kick in. Gentle stretching to try to loosen up joints was to no avail this morning. My jaw ached like never before but I guess I shouldn't be surprised it too is a joint. It is going to be one of those days that is clear. Ready or not I had to get up...

A little different type of blog post today.  The lighting is bad I know.  I can't tell my right from my left.  Hey I'm learning!   Here it is. You can click on the right I think and watch it in YouTube or just watch it in blogger. I hope you like it!

Notes From A Spoonie Chick: My Thirty Things...

Appalachian Trail

Woke this morning with all systems go. Back to baseline, not perfect, but good enough.
I have thought about a thru hike on the Appalachian Trail since my older brother and father went with their scout troop when I was in junior high. I have two shelves of books on backpacking and the Appalachian Trail. It’s one of those dreams that has remained a constant. I always believed someday I would do a thru hike...

Care for the caregivers...

On the eve of the close of National Invisible Chronic Illness Week, I'd like to focus instead on caregivers. Whether you are a spouse, significant other, adult child or parent caring for a chronically ill person, your partner's disease will take a toll on you too. Relationships can be difficult when both partners are healthy. A chronic illness can make a relationship much more stressful. We know the person who is ill needs support, but caregivers need support too. Extra burdens, physical and psychological, are shared by both partners. And they are often different burdens even though they share the same source. This is for the caregivers.... 



It’s my opinion that arthritis is one of the most difficult diseases to live with.  I am not suggesting other diseases are a walk in the park, but arthritis has with it four distinct factors that make it so difficult. 
 These include the extended period of the disease, the limitations of mobility, the continuous rollercoaster in fluctuations of how the body feels and the constant pain.  It is easy to see how one living with arthritis can easily become and sink into depression...

Thursday, September 15, 2011

Will Dr. Watson get it right? Taking the prejudice out of diagnosing invisible chronic illness

                                                                         photo: News: Auto Express News

I was so excited when i got an alert on my blog about Dr. Watson. He'll get it right! He won't be prejudiced against the hundreds of patients suffering out there and who have been run over by the medical profession and told, "It is in your head."

I jumped up and did my pre ra happy dance which is kinda like the moon walk but with arms flapping to and fro (not really but doing it in my head is my modified way to celebrate now). Is this it? Is this the answer to getting treatment for those patients with autoimmune disorders that put them in terrible pain and with severe fatigue? Can they finally get a diagnoses rather then condemnation to suffer on.

Will we for once have a non prejudiced observing mind that will take in the facts, digest them through millions of nano bytes and graciously and without prejudice give out a diagnoses? I surely hope so! 

This week is National Chronic Illness Awareness Week. I want to shout it from the rooftops that we are here, we are chronically ill, we need for the medical community to rally for us, we need researches to help us find cures. We need for those that are still suffering and yet diagnosed to be put on the road to treatment, to join us as part of our unity. For these patients I worry the most. They are still left out in the dark. They are still alone, frightened and often made to feel inadequate and at fault for their illnesses. This is wrong. This is how I hope Dr. Watson can help.

Dr. Watson was featured on Jeopardy. He won!  Medical News Today wrote an article entitled: "Doctor" Watson to Inform Medical Decisions: Not Sherlock's Assistant, But A Computer. It is ironic that I who always believed that finding a doctor with compassion and empathy is the key to coping with chronic illness would support a computerized doctor. 

Having a doctor that will listen and work with you during your long journey is critical in being an empowered patient.   But unfortunately I also realize that so many of us can't find those compassionate doctors that will listen patiently, take notes, and search the archives of medical knowledge to help diagnose those perplexing symptoms. Dr. Watson will! He may not have the compassionate component of human interaction but for those patients that have been left in the dark for weeks, months and years….they won't care. They will be happy to just have a name, a diagnoses to help validate their suffering, their right of passage into the world of invisible chronic illness.  And more importantly, a passage into the world of treatment. Perhaps in this case, human prejudice is best left out of it.

And I do believe that is why so many are left undiagnosed and still suffer. We are humans after all. And that includes doctors, nurses and the mass of the medical community at large. We are what we learn. We are what we experience. And that is the very essence of the breeding grounds for prejudice.  The very causes for why so many doctors default to the it is in your head, you are to young to have these problems, you are working to hard,  you are depressed, you need to take off some weight, you need to learn to deal with it…the prejudices go on and on.

I never in a million years would have believed that I could have so much hope and faith in a non human being.  In a computer program that will diagnose patients objectively and without prejudice. Welcome home Dr. Watson! I am so looking forward to you heading up my team!

What about you? Would you be willing to be diagnosed by a computer?

Monday, September 12, 2011

My furry four legged friends: The ABCS's of Pet Ownership With RA

I am so fortunate that I have already taken the plunge into pet ownership and I am glad I did.  This is not to say that having two kitty fur babies (Moomee and Mango) hasn't come with some challenges. I would be lying if i said everything has gone completely hunky dory.  But  the joy, love and humor they bring into my life on a daily basis far outweighs my ripped under bed, toys strewn here and there and fur balls that occasionally appear out of nowhere. They are now family members. And, they have given me their permission to say so.

There is a wonderful website (link below) that covers the pros and cons of pet ownership, so I am not going to rehash all of that. Instead I want to add my personal perspective and thoughts on areas of pet care that might be difficult for people with ra. Maybe, once you realize that fur babies are indeed better then a hot water bottle for your achy joints and they are more soothing then the best cd, you will consider becoming a pet owner yourself.

                Mango loves to hang out in our fruit bowl!
  • Think short hair if you don't want to have to comb them as much or have as much hair cleanup in general
  • Consider a petite cat so that if they lay or walk on you they don't hurt as much on your joints and do consider keeping kitty out of the bedroom unless you want to take the risk of being woken up at all odd hours. After all, kitties are nocturnal animals and prefer the night hours.
  • Maybe adopt an older kitty rather then a youngin or a breed   that isn't quite as playful if you think you can't handle the rambunctious types. 

Kitty Litter box solutions:

  • Train you kitty to use the toilet (don't laugh at me…this is actually doable).
  • Consider using the self cleaning kitty litter box
  • Buy smaller boxes of kitty litter and ask for help to load into and out of your car and if you have others living with you, have the litter box be their task :-)
  • Consider putting the kitty litter box up on a higher level such as a table so you don't have to bend down when cleaning or changing the litter.
  • Do use litter liners so you don't have to wash out the kitty litter box every week.
  • If your kitty becomes an outside kitty (although I don't recommend this for safety reasons), you can have a kitty door installed so you don't have to get up and down for bathroom patrol.

Kitty Grooming Solutions:

  • Probably one of the most difficult tasks to date for me is clipping kitties' nails. I have finally found the most wonderful nail clipper that our vet's assistant kindly sold to us.  We paid like $15 dollars for it through our vet and the vet assistant did say it is only sold to vets. I did try to find it online prior to buying it through them but couldn't locate it. It is a miracle as far as I am concerned as it is easy to use. I have tried several other clippers and for my ra hands, they just didn't cut it :-)  Use a towel during nail clipping if your kitty is a fighter. With this technique you wrap your kitty in the towel and leave the claw you are working on exposed. We use a tag team approach at my house. One of us holds the kitty while the other clips away. But if you live alone, the towel approach does work fairly well. Just be sure to schedule grooming day on a pain free day.
  • Consider bringing kitty into a groomer if you can afford it and if you can't handle grooming on your own. But for some, getting kitty in the cat carrier is worse then doing the maintenance yourself.
  • Be sure to buy a good cat comb to help with the excess hair from kitty. You will want to groom them daily because it will cut down on fur balls both inside your kitty and out.  Cats love to groom themselves and because of this can get huge hair balls. Grooming helps with this problem and it also will help to cut down on fur everywhere.
Yes, Moomee is eating a bone. She thinks she is a dog!
Feeding Solutions:

  • There is an automatic feeder that you may want to consider purchasing if feeding is too difficult for you. I have not personally tried any of them but will most likely in the future be buying one for my daughter. If you have more then one kitty, this may not be a good solution. In our household Moomee is an eating machine and Mango takes backseat on the food front. Chances are Moomee would gulp all the dispensed food and hog the food dish area before Mango could get a morsel. Ahhh…the joys of dual cat ownership.
  • Elevate your feeding area. There is no reason why you can't put your kitty's water and feeding bowl up on a designated kitty table. By raising the feeding area, you will take lots of stress off of many joints.

Household protection:

  • Consider using a sheet/quiltt to cover your furniture if you don't want to have to do cat hair maintenance on a regular basis. And a sheet is easier to wash then furniture.
  • Do try to match your kitty's color to the color of your furniture. In our case we already had our furniture and just happened to want a stripped orange colored kitty. We got two! You can't see their cat hair on any of our living room furniture but on black pants….oh wow! 
  • Be sure to buy several cat scratchers for your kitty. We have one in every room of our house. It has cut down on furniture destruction approximately 75%. There still remains those obstinate moments though.
  • Be sure to kitty proof your house by removing small objects they might swallow and any poisonous plants.
I am the lump they are laying on. I'm glad someone is comfortable.
Travel Solutions:

  • Kitty, just like us, must go to a doctor on occasion which means one must get them into their kitty carrier.  The best solution I have found to date to get our kitties loaded is to put the carrier on its end with the door open. We then lift up kitty and load them, back end first. Close the door quickly and slowly put the cat carrier in its normal position.
  • If you know you have a scheduled vet visit coming up, you can leave the carrier out a day or two in advance. Typically kitties love a new hiding spot and on the day of the appointment, try throwing a cat treat inside. Chances are your cat will go in to get the treat and you can quickly close them inside.
                                                                                   Peanut my grandpup.

  • Research your breed choice carefully as some breeds do have more health issues which can impact your finances.
  • Choose a smaller breed if you will be the one walking the pup. Larger breeds can be tougher on the joints but I recommend training school for all pups with you in attendance so they learn to obey your commands.
  • Consider a short haired breed as grooming will be easier and less expensive.
  • Fence in your backyard if you can afford it so you can let the pup roam there for his/her important job on your bad flare days.

Grooming Tips:

  • If you can afford to bring your pup into a groomer, this may be the way to go.
  • If you can't afford a groomer and you have a small pup, try using your kitchen sink for bathing. The higher level will help eliminate bending.
  • As with kitties, pups also need to be brushed frequently and checked regularly for ticks and fleas.
                                                                  Peanut patiently waiting for his share.
Feeding Solutions:

  • Consider getting a timed feeding dispenser  (for dried food only) if bending is hard for you.
  • And if you do decide to use some wet food, don't forget an electric can opener.

And just as we must ensure that other family members are taken care of in our absence (say should we need an unexpected hospital stay), have a few emergency caregivers lined up for the four legged baby.

So if you want to have a friend like no other and one that will not judge you….ever….consider adopting a pet.  There are lots of  wonderful rescue agencies out there for you to choose from.  It makes purrfect sense!

And if you have any personal advice on the pros and cons of pet ownership with ra, please be kind and share.  We are on this journey together and I would love to hear your personal pet stories.

Further reading on pet ownership:  The Pros and Cons of Pet Ownership      

Thursday, September 8, 2011

The ABCS's Of Preparing For Hurricane RA...

                                                                           (photo credit: NASA/Ron Garan)

As I watched with fascination and major concern over the most recent hurricane barreling up the east coast towards us, it occurred to me just how much ra is like a hurricane. 

There are tons of websites out there that one can google to come up with on how to prepare for a hurricane but none that I could find on how to prepare for ra.  And why not I want to know?  Ra is a disease that will majorly impact your life if you get it.  We are told to prepare for hurricanes days, weeks, even months in advance. We are told to heed the warning signs, take refuge in a safe place, collect up all your important papers, have cash on hand, prepare with 3-5 days of supplies…the list goes on and on.

And to me (I personally went through hurricane Hugo in Charleston, SC and recently Irene) ra can be worst then a hurricane. A hurricane is most definitely frightening but it does pass after a period of time, unlike ra.  If one has been diagnosed with ra or even if you have it in your family's history…ra could possible be with you for the rest of your life. And to me if there is even a 1% chance that you can get ra, please GET PREPARED!

How does one prepare for ra?  

1. Get disability insurance and get it now if your can! If you are currently working, know if you have short and long term disability insurance available. But do keep in mind that just because you may or are diagnosed with ra doesn't mean you will become disabled. But the statistics are there. And I recommend this for everyone. I know that none of us plan on becoming disabled but it can happen. And not just from ra. Things happen and you want to protect yourself for the short and long term.  And if you are a Mom, don't think that having your husband's income is enough in this day and age. If you are working, you income is important and you need to protect yourself and your family.  

2. Get and keep health insurance on yourself if at all possible. Currently as of 2011 if you don't have health insurance for one day, you will be hit with pre-existing conditions. This means that you will not be able to use your insurance for your ra if you got your new insurance after your ra diagnoses. The point here is, please get and keep health insurance if financially feasible at all.

3. Get life insurance on yourself early on. If you have ra or any autoimmune or really any illness history in your family, you would be smart to take out life insurance on yourself while you are young and still healthy.  The earlier the better and hopefully before you are diagnosed. If you work, your job may carry life insurance for you BUT as we all know jobs come and go in this turbulent economy. If you can swing taking out a life insurance plan outside of work, do it. Often the rates are reasonable and often if you have a pre-existing condition like ra, heart condition, etc. you won't get life insurance approved or you will have to wait for two years for the policy to cover that particular health issue for payout. And these policies from a job ARE NOT transportable….meaning you often can not take them with you once you no longer work for a particular company.

4. Plan, plan, plan. As with a hurricane, planning is the key. I know how hard it is to even think about this stuff but planning is the KEY here. Build up a savings account that will cover your family from 9-12 months if you can.  I would prefer you have a couple of years worth of expenses put away. And remember, you can always borrow for your child's education but you can't borrow in an emergency. In the event you have to apply for disability, it can take years to get approved. It is a lot easier to brown bag it now and put that money in a savings account rather then not have the money to keep your needed medications available should you become sick and without insurance. Save, save, save if you can.

5. If you have children over the age of 18, talk to them about preparing while they are young. I have already done this with all of my children. Now, I can't guarantee that they will listen but I can hope that they will be much better prepared should something happen then I was for this type of hurricane. And yes, the ra hurricane can bring a lot of destruction to one's life if you are not prepared.

6. Know your medical history and write it down for yourself. Find out what illnesses your Mom and Dad, grandparents, aunt and uncles, have or had. Information is the key. I look at this knowledge as being able to plot the possible course of your hurricane. Keeping in mind that hurricanes can shift and change, influenced by water temperatures, wind shifts, land structures etc. This type of information, in my scenario here is the information you will need to track your prospective hurricanes. Now, do keep in mind that you may never have a medical hurricane come into your life (I pray you never do!) but again, hindsight is key here. Envisioning the what ifs will put you financially and emotionally on course. And just like a real hurricane, if you have the time to shore up your home with reinforcements, you can survive the storm and enjoy the sunshine once again.

7. Financial preparation is not the only key here. Prepare yourself physically as well to ward off possible health hurricanes. Try to eat healthy, exercise and keep stress at bay as much as possible. And this goes for all family members with any history of illnesses. By doing these steps you are helping your body, mind and spirit strengthen in case it needs to battle a hurricane in the future. And you can eat healthy without breaking the bank, you can exercise without joining a gym and you can learn to relax without breaking the bank. My point here is…just do it. Find support groups online for eating healthy, exercising, reducing stress and begin the journey. And while you are at it, take all your immediate family members along for this ride if you can. I have learned over the past 13 years that all three of these areas are truly just a mind set. Begin slowly if you must but do begin. Small steps forward are much better then the opposite: stop or reverse. 

8. Find the joys in your life. Even if you are currently at the top of the world right now, find the joy in whatever you do. It is true, when eminent warnings are all over the tv about a hurricane, I have two choices in how I react. I can panic and take on fear, dread and the like or I can take these warnings to heed and begin to prepare and place my trust in myself and the knowledge I have about hurricanes (whatever types they may be). 

9.  Become an empowered patient now.  Learning to manage the health care system is not something you want to learn to do once you are sick. Knowing all the ins and outs ahead of time will make surviving a medical hurricane all that much easier. Start reading up on how to become an empowered patient and start practicing your newly acquired skills now. 

10. And last, be sure your partner has the same planning strategies put in place that you do.  Just because you may have more DNA links to certain illnesses doesn't necessarily mean you will be the one needing the disability insurance, etc. Accidents can happen to anyone. Prepare your entire family if you can.

The sun did come out after hurricane Irene. She has ended, she has moved on. But with chronic illness….she never moves on. She comes into your life and stays for good. So, please, please prepare.

Some of my other favorite websites that my help you in this process:
Suze Orman's Resource Library
The Wise Patient's Guide to Becoming An Empowered Patient