Sunday, January 29, 2012

Preparing For A Flare

Having ra requires one to be on top of their game with planning. So often we are left wondering when, where, and how a flare will arise. We might never find definitive answers to the when, where, and how of a flare but rest assured if you have ra, you will get a flare. 

Often a flare can put us out of commission for days on end.  If we are lucky our flare may last for just a few hours or if we aren't so lucky, they can last months.  And this is precisely why planning for a flare is so critical.  We already know that a flare can rob us blind. It can take our happy disposition, it can steal away our determination, it can humble us with pain but it need not completely put you into a stress meltdown with wondering how in the world am I going to do anything with this flare.

* First recognize that at some point you WILL get an ra flare.  Come up with your ra flare plan now. Don't wait until you are in a flare because it is too late at that point.

* If you work, know your employer's sick day policy inside and out.  Try to save these sick days for yourself rather then for your children if you have them.  Ask your husband or wife, if you have one, to take his/her sick days to cover the children when they are sick. This way you have your sick days available for yourself.  I can't tell you how many times when I was working that I took the sick day for our childrens' doctors appointments, dentists appointments, and to be with them when they were sick and had to stay home. And needless to say, when I was in a horrible flare, I was forced to drag myself to work because I had no sick days left.  Another option here, if you are fortunate enough, is to ask the grandparents to step in when the children are sick or need regular medical care. Save those sick days for yourself!  Now in reality some companies will make you forfeit your sick days at the end of their fiscal year. Check your company's policy on this and if they do make you loose your sick days, then as you approach the end of the year, use them up for your own doctor's appointments, etc. First you might as well use them and not loose them and second most health insurance policies also reset deductibles at the onset of a new year. You will kill two birds with one stone by doing this process. Just be sure to schedule your own yearly medical checkups ahead of time. You can always cancel them if you must push them off.

* Talk with your doctor AHEAD of time about what you should do when you experience a flare. Ask them specifically what medication you can take for the flare, how do you reach them if it is urgent (and yes this includes weekends and after regular office hours).  Ask them if they will be willing to call in a prescription for pain medication when you are in a flare or will you have to come into their office and ask them what their course of treatment will be to help you overcome this flare.  I DO NOT like the practice of an ra patient having to drag themselves into their doctors office when they are in a horrific flare. That to me is just cruel and unusual punishment.  If your doctor is not willing to tell you now what they will do for your flare when you should get one, ask why they will not come up with a plan. If they still give you lip or phoo phoo you off, find another doctor and do so now. Your main objective is to stay employed and it is their job to help you do just this! And please tell them I said exactly that :-)

* Stock up on whatever it is that will help you to manage the flare. This includes: any OTC medication that your doctor suggests, ice and hot packs to use on your joints, a heating pad, loose clothing that is appropriate for work (or if you aren't working comfortable for around the house), very comfortable shoes,  a hair style that you can do when your arms don't work right and supports for your joints if these help you. For my most recent bad man flare (sorry guys) I wore a jogging outfit. And I mean I wore it to bed also. This saved me from changing into pjs and allowed me only one change of cloths per day. I wasn't going outside anyway and my jogging cloths are loose, comfy and presentable should I get that unexpected knock at the door.

* Have a backup plan on how you will get to work if you must. Can your husband drive you if your flare is to bad to drive?  Can you car pool for a few days with another co-worker? Or the best case scenario, can you work from home?  If you have one of those employers that you feel comfortable with and they already know about your ra, asking if working from home might be an option depending on the type of job you do. Or perhaps you could work part time for a few days until you get over the flare. The main point here is to think ahead and plan on paper what you would do if you had a bad flare. Ask yourself how would I get to work if I couldn't drive?

* Have a backup person to cover your children. I am hoping, if you are a parent, that you already have this segment of the ra flare plan in place. And if you don't, you should. In my case, I commuted to work and had my neighbor as my backup plan should my children get sick and needed to be picked up from school. You will need to put this person (I suggest at least two back up people) on the emergency contact list at your children's school.  I was fortunate in one respect that my husband and I worked different hours so getting my youngest off to school rested on his shoulders while picking her up rested on my older son's shoulders. But I still had two other people on my contact list….just in case.  Having a back up person to help you with your children during a flare is critical. First, if you must drag yourself to work, chances are you will be exhausted once you come home. See if this backup person might not keep your children for a few hours after you get home from work. Or in the case of those that don't work, ask if they can meet the bus or pick the kids up from school. Or maybe they could come to your house, help cook the dinner, get the kids their baths and read them that nighttime story.  This way you can rest when you come home from work or continue to rest if you don't work. Flares require lots of rest as we all know.

* Forget the cleaning. It can all wait for another day. If by chance your flare does stretch on for a few weeks or months, call in a housekeeper or ask a friend or family member for cleaning help. Just imagine now who you might rely on for this help and put them on your ra flare plan contact list.

* If you aren't the type that is making multiple meals at once and freezing them, get yourself a list of food delivery places and keep it current.  This IS the time to order in food or have your husband pick up food on the way home if he doesn't like to cook.  I am all for home cooked meals but when one is in a flare, working, and trying to juggle childcare, cooking is the last thing you should have to worry about.  If you happen to be a member of a church, sometimes they have support groups that will step up and bring home cooked meals to those in need. Churches can be a wonderful support family in times of need.

* Plan for animal care as well.  If you have a dog, who will walk the dog two-three times a day? If you have a kitty, who will clean the litter box daily?  Just asking yourself these questions now will get the planning juices flowing.

Planning for an ra flare is like planning for a disaster.  Put your plan in writing, keep it current, and know which direction you will take to help yourself or who you will turn to manage the difficult tasks that must get done while in an ra flare.

I would love to know if you already have an ra flare plan and if you do, what is it?  How do you plan on handling your next ra flare?

Additional reading:

Monday, January 23, 2012

The Flare!

(Sadie says it all!)
We all have them. The dreaded flare! It comes on in so many different ways for so many different people that for this post I am going to focus on how mine tend to come on.

Lately, I know one is heading my way because first I tend to get exhausted. Then comes the shivers or feeling of being cold. Cold to the point I put on extra layers of clothing, turn up the heat, and burrow deep down under the covers. And need I not forget...the dreaded pain of it all. Yes, mine also come with that PAIN! You know what I am talking about if you have ra.
(Sleep...blissful sleep)

The pain really only depends on where you have ra and what medications you can take to staff off that pain. Mine has been ratcheting it up a bit and hitting me square up and down my spine and in my ribcage. I am not going to venture out on a limb here as we all know (snicker snicker) that ra doesn't hit the spine. Bull! Yup, bull. It does, it has, and chances are it will hit you at some point in your spine if you have a formidable case of ra. No, we are not imagining this doctors out there! RA does hit our spines!

For me I am able to rest when I need so for this flare from the deep down depths of the dark (I hate to use cuss words on my blog), I took to sleep. I also took one additional tramadol and additional pregnisone and no....I did not call my ra doc as you know I am currently trying to figure out how to get a new one. That doc would have not so kindly told me that I probably deserved this flare as I am not on the heavy duty ra meds he has recommended. Of course if you have been reading my blog you know why I don't want to try anymore heavy duty ra meds. I am worried about triggering cancer as I have had two types of thyroid cancers already and have a high history of breast cancer in my family. I will take the flare instead.

I slept for over 14 hours straight. Sometimes we just gotta do what we gotta do to get through these beastly things. I made it through and hoping that after I close this post and go back to bed, the morning sunlight will bring me a better day tomorrow.
(Sadie says maybe tomorrow will be a play date)

We can hope...can't we?

What do you do to overcome a flare? Can you tell when one is coming on? If you work, how do you cope when a flare hits at work?
I love my pj's too Sadie!

Further Reading:
The ABC's of Pain Management: Let The Games Begin
The Pressure Cooker: ABC's of RA and barometric pressure
A Perplexing Problem: The Girls

Saturday, January 21, 2012

The ABC's of vitamins for RA

It isn't quite as simple as taking vitamin AB or C but I will divulge what vitamins and herbs I am currently taking, which other ones I have tried and what I am exploring as my next options.

As with all health issues, you should always consult with your doctor should you decide to start any over the counter medicine, vitamin or herb for any chronic condition. Many people wrongly assume that vitamins can't harm you or that an herb, since it is derived from nature, is only good for you. True, most of the vitamins and herbs I have tried and continue to take have improved my ra symptoms to some extent but if taken with the wrong medication or if one takes too many of get were I am going here. Even vitamins and herbs can cause us problems unless we keep a sensible approach to it all.

Back in 1998 when I was officially diagnosed with ra, I adamantly refused to take any medication unless it was "natural".  I will confess that the pain won out in short order and I was taking some heavy duty man made prescriptions but I was also taking several other "natural" treatments proclaimed to fix ra.

First on my trial list was shark cartilage. Yes, you read right, shark cartilage.  For me it didn't do a darned thing but I was at that time in a very bad way with my ra.

Shark Cartilage, according to web md "has been used for cancer. However, this product has not been found to be effective when used for cancer. If you have cancer or think you may have cancer, consult your doctor immediately for more details and for proper treatment of your condition. Using this product alone without proper medical care for your condition may cause serious (possibly fatal) health problems. This product has also been used for arthritis and psoriasis. This product is not recommended for use in children." 

Next on my natural quest to conquer my then ragging ra was something my husband heard about on a radio advertisement while driving to work one day. I can't recollect the exact name of this professed cure for everything but I do know that it was very expensive and it DID NOT work at all. It was made from seaweed or something like that and was to be taken daily. It failed miserably and I am ashamed to say that yes, I was taken by the snake oil salesman.

For years after that, I pretty much ignored the holistic approach to ra all together. I did do some physical therapy, pool exercises and wore splints but I obeyed my doctors orders to the T.  I took so many prescriptions that it was difficult at times to figure out what was working and what might not be working. Then it all imploded. I became allergic to almost every single medication I was taking except Enbrel. I think my body just rebelled and said I can't process this stuff anymore. 

Fast forward about 12 years and this brings me to a more current day story. Since developing these life threatening allergies I was left with very little to treat my ra. Today I am still taking what very few medications I am not allergic to. These include pregnisone, tramadol, and thyroid medication. And that is it for the prescription types.

I felt that there must be more I could do to help my body heal itself and so my quest to discover what might work for me began. As with most things, I first turned to the internet for help. Once I narrowed down the list of vitamins and/or herbs I was willing to try and which I felt might help ra, I brought the list to my NJ doctor to review. She didn't have a problem with any on the list I presented.

So today I am taking:
Vit D3 which was added about 8 months ago by my endocrinologist (I was lacking it) 
Calcium, magnesium and zinc which I was instructed to take due to taking pregnisone which can lead to thinning bones or osteoporosis
Primrose which I added about 6 months ago
Flaxseed Oil which was also added recently
Fish Oil
Collagen Type 2
Turmeric (which I had to stop taking as I am allergic to it)

Interestingly John Hopkins reports "The most commonly observed vitamin and mineral deficiencies in patients with RA, are folic acid, vitamin C, vitamin D, vitamin B6, vitamin B12, vitamin E, folic acid, calcium, magnesium, zinc and selenium. Although, food is always the preferred source for vitamins and minerals, it may be essential to use supplementation to assist in counterbalancing the outlined deficiencies and improving nutritional status for patients with RA. Increased intake of antioxidants such as selenium and vitamin E may decrease free-radical damage to joint linings, which diminish swelling and pain. However, to date, there have been no human clinical trials that convincingly prove or disprove the efficacy of antioxidant use. Supplementation of calcium and vitamin D is also recommended to decrease the risk of osteoporosis that results from nutritional loss of these supplements, from menopause and from concurrent steroid therapy."

I have yet to explore the other vitamins listed above as a possible option to add to my current regimen.  First, my current insurance does not cover vitamins and second, this can get to be expensive. And did you know that currently we can not include a non prescription vitamin as part of our health care costs for taxes? Perhaps one day this will change and we will be able to deduct some of the alternate types of treatments available for both ra and chronic pain that have been approved by a doctor. I can dream can't I?

Interestingly, I have been thinking about adding a protein powder to the mix as after reviewing my daily intake of protein, I am far below the suggested amount.  I am beginning to believe that my recent problems with increased tendon and muscle issues might be exasperated by my lack of protein.  But as with all things, only time will tell if adding this will help at all.

Are you currently taking any vitamins and/or herbs that you believe have improved the symptoms of your ra or chronic illness? Have you gotten a doctors review and what has been your doctor's reception to your suggestions of adding "natural" remedies?

Sunday, January 15, 2012

Is it class warfare after all?

I hate to even ask this, I really do. But, after looking back over my journey for the past 14 years, just passed this mark on New Year's Eve, I have to answer a resounding yes. Is it class warfare after all?  What class warfare you are asking by now?

Medical class warfare I scream! And what is even more disappointing to me, I can't seem to see a resolve to it all...not at all.

Let me explain a bit further of where I am coming from with all of this. My son, now thirty, has a half way decent job and a typical middle class salary with it. And yes, I know that even keeping employment right now is a God send. He also has insurance for health care. Unfortunately he also seems to have inherited some of my autoimmune genes as well. He has been diagnosed with sjogrens recently. Now having insurance one would think that one could go to the needed doctors, receive the needed prescriptions (copays expected) so that one could continue to stay gainfully employed and hopefully give back to society as well.

Well, that just isn't the case. I would scan in the document he unearthed in his health care plan but I am afraid that may cause too many problems but I do have a copy of it. Apparently they have an exclusionary list of ailments that are not covered. This has nothing to do with pre-existing conditions and excludes all insured on this plan. Now, when did all of this happen? I am not talking pre-existing conditions but refusal to pay for any care for over 36 diseases or conditions. Some included on the Uninsurable Conditions list are:

Alzheimer's disease
ALS (Amyotrophic lateral sclerosis)
Acoustic Neuroma
Collagen diseae
congential heart defects
congestive heart failure
Chrohn's disease
Hep B and C
muscular dystrophy
polycystic kidney disease
rheumatic heart disease
sjogren's syndrome
tay-sachs disease

Wait, I am not yet done. And now add something called Ratable Risks. According to this document "the following medical conditions are uninsurable for specified time frames and ratable risks thereafter. Whether they fall into an uninsurable or ratable category may depend on time frames, severity of conditions, treatment, stability, and prognosis. This is not an all-inclusive list but a reference of many conditions of questionable insurability. Some listed conditions may require a rating that exceeds our risk tolerance, and coverage will be denied indefinitely."

Some on the list include (63 conditions total listed):

addison's disease
ankylosing spondylitis
anorexia nervosa
atrial fibrillation
chronic fatigue syndrome
colitis (ulcerative)
diabetes mellitus
multiple sclerosis
obstructive sleep apnea
parkinson's disease
peripheral vascular disease
rheumatoid arthritis

Yes, this is indeed class warfare! If one has lots of money, one can pay cash for their doctors, medications, etc. or even buy insurance at a very high premium to cover these conditions but if one has this insurance(and I am afraid almost any insurance of late), is middle class or lower class, one can't afford to get sick at all!

I was wrongly under the assumption that insurance in this country should cover something but it behooves me, or anyone reading these lists, to exact what precisely they are covering at all.

I welcome a discussion on this as although I don't want to get political on my blog, I am starting to realize that perhaps at some point we need to get political. I for one value human life and I will clearly state that I do believe we should provide healthcare for all and for all conditions. How do we resolve the insurance issues, cost of prescriptions, and medical care currently ravaging not just our economy but humans as well? If we don't stand up for healthcare coverage for all, many will die in this country (and many have already died). We need to ask ourselves precisely what values we hold dearly. Do we believe that life and health are a cost that should be shared by all? Do we believe that it is the individuals responsibility to acquire their own treatments, even if this ultimately leads to their own death due to lack of money? This is truly the bottom line and yet I have not heard this mentioned on the national news media in these terms.

How much are we willing to pay for a "healthy" life?

And more importantly, how do we as individuals begin to make the changes we believe are so desperately needed in this country?

Monday, January 9, 2012

How Cats Are Like RA

Hanging out with friends can be relaxing!

Eating greens is a healthy thing to do!
Sleep is number one on the to do list.
Shopping can be a distraction.
Making a bed is impossible!
Getting a massage is the bomb diggity!
Furry friends can reduce the pain in life.
Stretching can be a good thing!

Further humorous reading:

My Happy Tool Kit...A New Purrspective!

The Many Faces of My RA

My New Montra...

Wednesday, January 4, 2012

The Crockpot Theory

It's a new year and for me a new way of doing whatever it is that will make my life easier, simpler, and more livable with ra.

A crockpot or slow cooker will not only get you out of the kitchen quicker but it will also provide you and your family with wonderful, healthy meals at a fraction of the cost.  And did I mention that you don't have to stand over the stove stirring your creation constantly. You simply throw in your ingredients, stir them up gently and leave them alone to slow cook for hours.  And if you work, you can prep the pot in the morning and leave it cooking all day (do consider a programmable version if you work) and return to a fully cooked meal. Viola! Instant chef in the house!

It is also the time of year to find wonderful deals on just about everything. So if you don't already own one, may I suggest that if you were lucky enough to get a gift certificate to a retailer that you buy yourself a crock pot.  There are just about as many crockpots out there as recipes for them.

And please, please be sure you look for a coupon or coupon code if you are buying online. You can save a small fortune on purchases if you just take an extra minute to search in google (or your favorite search engine) for an applicable coupon or coupon code.  Type in the name of your preferred retailer and the word coupon.  And may I also suggest if you are an online shopper that you consider signing up on a site called  You can earn cash back for each purchase you make online through their website.

If you have a large family you are still cooking for then you may want to buy one of the large capacity ones but if you have downsized like my family, you may want to consider a smaller sized one....say the four quart size or so.

I bought mine for myself as my Christmas present. OK, this was my excuse but in my mind it helped me to justify buying it in the first place. I have this thing with buying things for myself. I am not sure if it is a guilt thing or because I grew up under the less is better philosophy but in either case, I am now a proud owner of  a wonderful crock pot!!

I am now on the hunt for yummy crockpot recipes.  I am sharing here my first crockpot looking but it really it did taste yummy and unfortunately I didn't get a final finished picture which looked much better.  So if you have any favorites, I will so appreciate you sharing them with me.

My first crockpot beauty is bestowed with the name Tantalizing Turkey Tidbits. Combine the following ingredients and cook on low until done (about 4-5 hours depending on the size of your crockpot):

1 package of ground lean white turkey meat
1 large onion (I use the sweet type but any onion will do) chopped
4 cloves of garlic chopped or you can use chopped garlic from a jar
1 jar of spaghetti sauce (I love the Garden Type with lots of veggies in it)
2 teaspoons of Ms. Dash (I use the garlic one but you can the regular one also)

Cook the above mixture for about five hours, then add in one package of cooked frozen mixed veggies. Be sure you cook them before you add them to the mixture. You may be able to add them in at the beginning of this process but I like my veggies crispy, so I add them in towards the very end. I used the mixed version with corn, carrots, and asparagus for this particular day.

If you are avoiding tomatoes for any reason, you can probably substitute chicken broth for the spaghetti sauce and add some flour for thickening (or corn starch for gluten free) but I haven't tried this yet. I am planning on making a stew in the future though and will let you know if this works.

Do save your receipt! If for any reason you find that you don't like using a crockpot (you will have to post and tell me why as I can't fathom that you won't love using this nifty little cooking machine), you can always return it to the store. Waste not, want not!

Happy Crockpot Cooking and do share your new found recipes!

Update: my only complaint so far with the crockpot/slow cooker is that it can be a tad bit heavy when trying to get the ceramic inside out for washing. If you have an extra set of hands available, leave this task to them :-)