The Frustration of Chronic Illness

There should be some type of meetings for us to go to.  Hi, my name is Rebecca and I lied 18 times today.  No I’m not jesting or poking fun at AA.  Many of us with chronic illness display the same people pleasing issues that addicts have.

Don’t believe me? Go ahead…ask me how I’m doing.  I dare you.  My answer is going to be something like this “pretty good…doing fine” or ‘Oh, I’m getting along…” and I’m going to leave it at that.  I mean, do you really want to know?

My right wrist is permanently fused.  Thank God my fingers still move.  Most days it hurts like hell.  I’ve already decided that if I lose use of my fingers that I’m good with amputation, especially if that mitigates the pain.  It hurts to type, wash dishes and feed myself.  I’ve learned to do just about EVERYTHING with my left hand.  Yes, EVERYTHING, infer accordingly. Well except cut with a knife, my knife skills are horrific and will probably one day lead to an ER visit.

Do you wanna hear that my left knee crunches and crackles like rice crispies?  Or that after standing up to wash dishes and load the dish washer or put on a load of clothes my feet swell and become numb.  That I’m only good for about one hour of chores in the morning and another hour in the afternoon?  That buying groceries exhausts me and by the end of the trip to the store I’m shuffling about and dragging my swollen aching feet.

 

Swollen foot...developing another nodule.

 

Or, do you want to hear about the fatigue?  That feeling of being bone tired and utterly exhausted but knowing that you still have to get up and get the kids to school or fix dinner after a long day at work.  Or maybe you want to know about the burning dry eyes, dry skin and how difficult it can be just to swallow food.  How you sometimes eat soup because it’s EASY and not because you are on the soup diet.

Oh you wanna talk about diet…why don’t you take some of these little Satan’s tic tacs…prednisone.  You will bloat up like a bull frog.  But later, when RA ravages all your systems, you start wasting away. 

Or maybe you’d like to hear about the pharmaceutical side effects?  My hair fell out on 2 of the 3 drugs I tried.  Methotrexate made me so nauseated, it was way worse than being preggers with a yager hangover.  Now THAT is nauseated.  The Aleve that I currently use to manage the daily inflammation is eating up my stomach.  I try to remember to take a prevacid each evening and keep a bottle of Tums next to my bed.  It seems that the drugs are almost as bad as the disease itself.

I could keep this up for quite a few more paragraphs…but if you read this far then you are getting my drift.  Four out of Seven days a week, I feel like shit.  Is that what you want to hear?  The truth smacks and doesn't make for polite Wal-Mart/grocery store conversation.

What can you do for your friends that may have Lupus, RAD, Reynaud’s, Sjorjens or Psoriatic Arthritis?  If you notice me or them having trouble lifting a cup (yep, the old coffee cup can sometimes be too heavy to lift) offer to help.  If you notice your friend, sister, mother/father looks tired don’t offer to help or ask about a meal.  Just show up…sweep, vacuum or load the dish washer.  Pay for someone to clean their house. Drop off a pot of soup or frozen casserole.  Believe me any help will be appreciated.

 

Please understand that if you see one of us out somewhere with family or friends, they are making a TREMENDOUS effort to be there.  Just because they are out and about doesn't mean it won't cost them later.

Yeah…I was a little worked up when I wrote this.  It is so hard to get other people to understand the pain, the debilitation, and the life sucking of a chronic disease. But I ain’t taking none of it back…it’s the truth.  And if you can’t handle it, then please just walk away and don’t ask…because today I feel like shit…and I’ve got a softball awards banquet tonight that I don’t intend to miss.  So I’m off to find my prednisone and aleve.  Gonna chase it with some Benadryl,  put up swollen foot and rest.

Preparing to go Low Carb/Kind of Gluten Free

The past couple of weeks, as suggestions by family and a few forum friends, I have been researching gluten and its effects on the autoimmune system.  Wow!!  Who knew? It has amazed me at how much I have learned not only about RAD, but about the whole spectrum of autoimmune diseases including celiac disease. 

There is a ton of information out there and I have read so much that my head hurts…pun intended my migraine friends.  I can’t recall all of the data, but the gist of it is today’s modified wheat is much higher in gluten than what our grand and great grandparents ate.  This could be leading to an increase in the many people whose bodies respond in a negative way to gluten.

And by gluten I don’t just mean white bread.  The stuff is everywhere…cookies, cream soup, gravy mixes.  It is truly difficult to comprehend how much gluten is in the foods we buy and consume each day.  I am very overwhelmed and have been for about a week.

It is difficult to determine where to start.  Weight watchers has been working for me until I went back on prednisone for a week.  I think it would be possible to low carb/less gluten using the weight watchers plan.  I’m still researching this part so I will get back with you on this.

I’ve read part of the blond chick from The View, Elisabeth Hasselbeck's journey to a celiac diagnosis.  It is heartbreaking at how she suffered and amazing at how she has overcome its debilitating effects.  It does give me hope that through the right combination of meds, diet and exercise that I can recoup some former quality of my life.

My goal isn’t to run marathons or swim the English Channel.  I simply want to get back to a point of feeling well with enough energy to accomplish each day’s events.  So please bear with me as I start to eliminate all this wheat.  I’m pretty sure my family won’t enjoy this and it won’t be easy.  I’d certainly appreciate your prayers and support.

Today's Doctor Visit

Confused, Annoyed and Frustrated

Granted most folks don’t enjoy going to the doctor.  I came very close to canceling this appointment as I had a list of other things that I could have done.  Talladega, 8^th grade community service project, laundry…well you get my drift, just about anything beats a trip to a medical professional!

Since appointments are hard to reschedule with my doctor I decided to go ahead, spend the $20 bucks on gas and create another medical bill. This was my first visit since starting the biologic cimzia.  And since I hadn’t been on any type of DMARD for about four months, I’ve noticed a good bit of inflammation and pain in several (or most) of my large joints.

My current doctor is really young, like maybe 12.  Not really, but isn’t it weird when you finally start to get older than the doctors?  I wanted to ask for his driver’s license or school ID.  He is very thorough and seems to at least take more interest in my overall well-being than the previous doctor.

However, when I went through my current state of RAD…severe pain in knees, hips, lower back, shoulders and wrist, his response kind of put me off.  He said that the resulting pain was not from the RAD inflammation but due to osteo damage.  Duh…what?  I was a bit confused.  He said if I had insurance, he would send me for physical therapy and maybe injections in the knees.  I was thinking more like can’t you do some X-rays and check for damage first?

Apparently I haven’t been exercising enough either.  I have orders to walk 10 minutes a day. EVERYDAY.  And, he said not to sit for more than 15-20 minutes at a time, which isn’t a problem unless you are driving somewhere.  Maybe he and my hubby are conspiring against me to get all that laundry caught up.

He also recommended that I start water aerobics/swimming when possible.  I will definitely be joining the swim place as soon as we get relocated.  Aleve for pain, prednisone as needed and continue the cimzia to give it more time to work on the RAD.

All of this cost $88 bucks and two hours of my time.  Maybe I am just being an impatient patient.  But I want to feel better. NOW.  RIGHT NOW.  Is that so wrong?????

Yes, this is a whiny post…hoping my fellow RAD rheumies can give me some advice and my well friends will hunt me down and gently kick me in the rear!

Cimzia Update

I was the dart board like recipient of my 3^rd round of injections this past Sunday.  My mother is still getting way too much pleasure out of these injections.  I may have to find another nurse! My injections were running one week behind due to finishing up some taxes.  This last go around, I didn’t have any major symptoms, just felt really yuck and tired.  The headache didn’t show up until later in the evening.  This morning, I’m still tired but up trying to check a few to do’s off my list.

The only symptom benefit thus far has been a reduction of the sjogrens: less dry mouth and not having to use the eye drops daily.  I am supposed to take injections every two weeks.  I can assure you that stretching that out to three weeks was too far.  By the end of the 3^rd week, the sjogrens symptoms had retuned.  At this point, I can’t say that the RAD pain has lessened any.

So I went to the discussion boards, reading up on this biologic.  There don’t seem to be as many people taking it.  And it does appear to take several months, 4-6 by some accounts, to get noticeable relief.  And most people are taking it in conjunction with other medications such as methotrexate.  Which makes me shudder just to type.  MTX was a horrible treatment for me.

I am still using the white knuckle approach to the pain.  However, the inflammation has become “system” wide and now I think it’s time to call the doctor and get some type of steroid kick.  Have I mentioned that I’m not fond of steroids?  Mainly the weight gain, but I get extra cranky when on them for an extended time.

So some more research later I found that many patients routinely will take a 3-5 day course of prednisone starting with a 30 mg punch, then 20, and finally 10.  Or even starting with a higher dose and stepping down over the 5 days.  These patients are stating that a shorter course of prednisone is enough to give a 3-4 week relief from their current flair.   The benefit is NOT taking prednisone at a lower dose for an extended time.

In the meantime, I’ve decided to add walking a few days a week and light weight lifting on the opposite days.  Light, as in 15 minute walks and maybe 10 minutes of weights and so far so good.

Faith and Health

It was raining this morning and I was sleeping sooo good. My bones were achy and for a slight minute I was so tempted to roll over and keep on sleeping. I have been very busy this past week working on taxes, running children around and trying to get our trucking business better organized.  I’m also known as Scott’s secretary and bookkeeper, errand runner and parts fetcher.

But I rolled out of bed and prepared to go to early church services.  Early, as in 8:30 a.m. early. And it was raining, you know I might melt.  Or get lumpy.  And my knees hurt.  I gimped into the Warehouse through the rain thankful for a hot cup of coffee, delivered by the best teenage coffee maker in South Georgia.  After a great music service and message, not only was I in a better mood, I felt better.

I am very grateful for a contemporary service where I can dress down and not worry that someone might be offended by my casual attire.  There is nothing like attending church in blue jeans and a hoodie in the winter and capri's and sandals in summer.  (My fellow RAD folks know how difficult just getting dressed can be!)

I really don’t care what science says, I know that there is something about a great worship service and Sunday school lesson that makes you physically feel better.  No matter what type of chronic illness you may have, faith can lift your spirits and well-being.

Our scripture this morning was from Hebrews 12 about perseverance and running a race.  Pastor Ken used a marathon as an analogy of faith.  What a perfect reminder for those of us that have chronic illness...approach that illness like a marathon, train daily, be steadfast and persevere through the hard days. 

 

 

Biowhats?

BioSimilars and RAD treatment

 

Part of "getting better" for me has involved learning more about RAD.  I am trying to take the time to read about treatments, research, etc.  And I have been learning a ton of stuff.  I found the following article link on facebook Flordia bio similar article.

 

I read, then read some more.  At first I was livid.  Then I read some more plus the sidebar in the article.  And it got me thinking, what are the other 14 states?  Could Georgia be one of them?  So of course, the little journalist in me began digging.  And digging.

 

So far I've learned that Virginia passed a bill allowing biosimilars, but with a lot of restrictions.  Also  (gasp!) California appears to be heading in the same direction. It looks like FL and Oklahoma will pass a bill proposed by big pharma lobby.  Other states with some type of pending legislation are Illinois, Mississippi, Indiana, Oregon, Pennsylvania, and I'm sure others. 

 

I can't find Georgia on that list, but I'm sending out an email to my state representative to ask for any updates.  I also want him to know my position on biosimilars for future treatment.  I am going to continue reading and researching on this area and will try to update any new info later.  Also go to GaBi to read some big pharma reaction. 

 

My intent has never been to write about the technical aspect of RAD treatment, just my journey and how this chronic illness has affected my entire life and my family.  And that is still my intended direction.  However, the idea that more affordable treatment is out there and our government in the interest of big pharma would block patient access is just outrageous.

 

Here is the estimated cost of RAD treatments...stew on these dollars for a while.

 

 

 

Nothing like the good ole FDA screwing patients over. My biologic treatment would cost me $2800 per month. When I had insurance, I had to go through a course of several drugs before it would even approve treatment. So it has taken two years and four months for me to get to the point of being able to take a biologic.

During that time I've "lost" my right wrist, both knees mainly the left one, my hips and now my lower back. While all this damn time there have been cheaper/similar drugs available. But not in the good ole US of A. 

 

So where do we go from here?  Maybe a European vacation for the Thorpes, all tax deductible? That would be great, but not likely, even though this is highly possible for the wealthy.  Plus I'm pretty sure I'd be the one to get caught in customs trying to smuggle my meds back into the country.

 

I guess the answer, at least for me, is more involvement with the statewide RAD group and letting folks in the ATL on the hill know that this is more than a big pharma lobbyist issue.  (Ay Tee El...just trying to help out the northerners.) And I want my representatives to know that RAD patients have faces and families and lives.  And we need access to affordable treatment.

 

 

 

 

Cimzia Update

Warning: Medical talk…a teeny bit graphic for the needle queasy type.

My new meds came in last Thursday all packed up and surrounded by cold packs.  Having no idea what was in there, I eagerly opened the box.  Wow!  The syringes were really cute and get this, designed ergonomically for RAD patients.

Since I didn’t want to “lose” the weekend, I decided to inject Sunday evening.  And although these adorable little vials of medicine are friendly to the joint challenged community, I still had to rely on my Mother to handle the sticking part.  Which, by the way, she does with entirely too much relish.  Being right handed is proven to be a challenge since my right wrist is permanently knitted together.  I am still learning to conquer the world as a leftie. Smiley face.

I read the instructions several times.  She read them too.  I also read the white paper included in the box, seeking out those side effects in the finest of print.  I didn’t see anything abnormal, other than immediate death by heart attack, so we proceeded onward.

Now when this pack says inject at a 45 degree angle like a dart that is what it means.  The needles are not very sharp and not tiny either.  So the first injection wasn’t pleasant and the meds burn.  The directions said to inject in fat and if using two injections put one in stomach and one in the leg.  Oh well.  My belly is wide enough for two injections per me, one on the left and one on the right.

The most common side effect, watch the injection site for rash or reaction, did not occur.  Yippee!! And as far as other side effects, I’m doing OK.  I have had a dull headache this week that has gradually gotten better and I’ve been a little achy and tired.  It is hard to tell if it is the cool damp weather or the injection.  I know my bones are ready for some warmth…these last two weeks have been painful.  Nothing I can’t handle with a little ibuprofen. 

The doctor offered prednisone until I could get the meds in my system good.  I said no thanks.  Let me tough it out.  I’ve been making very slow progress on weight loss and didn’t want to give up that ground to a steroid bump.

The best think about Cimzia is I don’t inject again for two weeks.  I will take another “double” dose followed by a third double dose in two additional weeks.  Hopefully at that time, I can go on the maintenance dosage of one vial every two weeks.  After about 12 weeks, I might be able to inject monthly.  So here’s to praying this is the biologic that will work for me and ease the disease progression.  I badly want to get back to a “normal” life.

Health Update...New Meds coming soon

New Meds

I was diagnosed a little over two years ago with rheumatoid autoimmune disease.  (It ain’t arthritis people.  I only wish.) My first line of treatment was lots of Aleve and prednisone.  And wallah!! Gained 20 pounds.  My doctor finally put me on methotrexate (MTX) and it was absolutely horrible.  I started at a pretty high dose and my system just couldn’t tolerate it.

I made rounds to several doctors seeking to “relieve” the side effects but to no avail.  MTX just didn’t work for me.  Frustrated with the two doctors who wouldn’t communicate I stopped all treatment except for some ibuprofen.  My thoughts were dang.  I’m either frying my liver or frying my stomach.  Give me fried stomach and a G tube.

Alas, that was a bad decision.  During the 8 months that I self-medicated and self-treated, I back pedaled. HARD.  My right wrist is permanently knitted together and my knees, especially the left one are shot out.  Plus my hips drive me bonkers.  So if you are new to RAD, TAKE YOUR MEDS.

I didn’t realize just how quickly the disease could degenerate my joints.  Add the Sjogren’s syndrome attacking my moisture glands and it has become a big whopping barrel of crappiness.  In November, (maybe after a recommendation from the family orthopedic which I’m sure came from insistence from my mother), I sought out a different Doctor.  He is very young.  But cute so that helps.

He recommended changing meds and suggested I tried Arava.  It had lessened side effects when compared to the MTX (no nausea, less headache, pill and not injection).  However, I continued to have the same female related side effect. 

I have been off treatment for about 7 weeks and am beginning to really feel the stiffness in my joints.  So thankful for my electric blanket collection and assorted heating pads, without them, I wouldn’t have made it through this cold weather.

Due to the rapid decline in joints, especially this left knee, he recommended a try a biologic.  This is what I requested from the first doctor, aggressive treatment.  Finally.   I am also fortunate that I can get help from the pharmaceutical company.  

My meds should arrive tomorrow.  I will be taking Cimzia by injections and I will rely on my mother to help me with those.  Right hand no bendy, therefore no self injections for me.

I have been online today reading the Cimzia literature and trying to figure out whether to expect side effects.  Previously injection day was Saturday evening so I could take my chemo cocktail and sleep most of the nausea off.  Praying this goes easier and my disease progression will lessen.  Maybe even stop.

I truly want a treatment that works so my family can figure out our “new” normal and get on with getting on.  So stay tuned…I’ll update on the new meds next week.

Grape Ape: Part II Adapting to RAD Disease

My life must now adapt to this disease and its limitations.  Scott and I have to make “new” retirement plans. Our original plans were to sell out, buy a piece of property in Kentucky with a meter pole, well and septic tank and spend a few years full timing in a very large RV. Mosey through the west up to Alaska, work and ride a while.  Eventually settling back to Kentucky…the crossroad state of RVn nirvana, basically 8 to 10 hours from anywhere!  I want to see my flyover states…the Grand Canyon, Mount Rushmore, ride route 66, and visit Oklahoma one more time.

Maybe not.  Alaska is too cold for me.  Probably not even Kentucky. Did I mention, I’m not that crazy about Florida or Arizona, even though both states have great weather for RAD patients? And forget riding.  I can barely ride to Macon and back without stoving up for days.  So we “adapt” our retirement plans…I just don’t know to what yet.  And I keep hoping for some new miracle drug.

Treatment (Just call me Dr. Thorpe)

Hmmmm.  This one gets me in a lot of trouble.  I am currently self-treating.  Prednisone as needed along with some Aleve.  I stopped the methotrexate injections to have a surgical procedure in April.  I started the injections back up in June only to have “side effects” return.  So, I am currently seeking ALL new doctors. It is my treatment plan and I can fire my RAD and gyn doctors if needed.  (Note: Methotrexate also thins the blood…no slicing and dicing when injecting.)

Yes, I need to get back into treatment.  I am well aware of how the disease is beginning to affect additional joints that were just fine six months ago.  Bear with me; it is difficult to return to a life of nausea, tiredness and hair falling out. 

Disease Progression

Is it worse? Probably.  I’ve developed sjogren’s syndrome, a kissing cousin to RAD.  The dry mouth has gotten really bad the last few weeks.  I long for a real crushed ice machine.  I keep water or tea with ice to drink all the time, especially at night.  Cotton mouth is yuck!

My joints burn similar to the sensation of having a foot asleep.  You know when it starts waking up and your nerves tingle and burn at the same time?  Except for its bones and joints that burn.  Shoulders, elbows, knees, toes, fingers.  Are you singing knees and toes, knees and toes?  Ha!

I have a large RAD nodule on my right arm near my elbow.  And I basically can’t bend my right wrist at all.  My fingers still work.  So as long as I can type and 10-key, I guess I can still hold down a job.  I joke with co-workers about developing a num pad for my feet.  Bet that would burn some calories!

The numbers tell me that I really need to work for at least another 5 years. That is my short term goal.  Sometimes my body tells me something altogether different.  If I’m lucky maybe the two will meet in the middle.  But, I’m still hoping for some type of new treatment that leads to a true “remission”.

Future Treatment Plan

·       Find another doctor or group of doctors that treat the entire RAD, not just the symptoms.

·       Weight loss…got to get some lard off these joints

·       Exercise…it is soooo hard when I’m tired.  I’m going to start walking more as soon as it cools off.  I also need to get my treadmill repaired.  Repairman suggestions?

·       Stress…less stress.  Much less stress.  Hear that darlin’ daughters? LESS STRESS.

·       More Rest. 

 

I have finally admitted that RAD affects everything that I do. Umm EVERYTHING.  I can brush my teeth with my left hand, brush my hair with my left hand and even have keyed financials with my left hand.  Now that’s adapting. 

The Great Grape Ape: Part One

I have rheumatoid autoimmune disease which is my 1000lb gorilla in my and my family’s life.  I sort of like to think of it as this bright purple ape mocking me, you know like Grape Ape.  And if you know grape ape then you are older, like me.

I was diagnosed about 20 months ago after what I thought was the beginning of a stroke or a heart attack.  While sitting in the gym watching JV basketball with Maddie, my right arm starting tingling and felt numb.  Pain radiated down my arm.  So I left the gym, went home and took an aspirin.  The pain seemed to lesson, so I returned to the basketball games.

I went to Dr. Patel and she diagnosed rheumatic fever and drew a few pints of blood, testing for all kinds of autoimmune diseases and cancers.  The results were mixed so she sent me for an echo cardiogram.  Believe it or not, I have a heart.  And it was just fine.

Two weeks later in Tifton at a Jr Pro basketball game, the same thing happened to my left side.  I decided maybe I should go back to the doctor since the pain was now in both arms and my shoulders, and my elbows and hands felt like they were on fire.

More blood work later, my Rh positive factor was through the roof and Dr. Patel referred me to a Rheumatologist.  I had two options, the doctor in Thomasville with a 6 month waiting list or use a not on my insurance doctor and wait 3 to 4 months.  By the time my appointment rolled around in April, I had been in pain for nearly four months. My ankles and toes were extremely swollen and I had basically lost the movement in my right wrist.  Dr. Patel had prescribed prednisone and Aleve. 

Xrays and blood work, and the RAD doctor confirmed the disease, again.  She started me on methotrexate pills, folic acid, more prednisone and Pepcid.  Those pills are strait from satan. I later found out that methotrexate is used to treat and shrink tumors and is chemo in a pill.  After two months of nausea, my doctor swapped me to injections.  Only one problem, my right wrist still won’t bend.  So my mom gives me my shots…when I take them.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001467/

My RAD responded to the treatment, but I still had to take my “chemo” cocktail before “shooting up” on Saturday night…one zophran, two Pepcid, two folic acid and two ibuprofen.  And then I would attempt to sleep through the nausea.  In addition to the worse than being pregnant nausea, I had female related side effects.  Read your drug labels folks.  You’ll be amazed at the side effects of some drugs.

The RAD took several months of my life.  I was so tired and in so much pain that I don’t really remember much other than working and going to bed.  I spent hours wrapped up in heating pads.  Maddie even helped me dress most mornings and AnnaBelle would brush my hair.  I guess I have gotten use to the pain.   I still hurt, but just grit my teeth and go on.

I still get angry at times about my diagnosis…mostly at myself.  I should have taken better care of myself…even if that meant some very drastic decisions.  I use to hope for remission.  Now I realize that remission is total BS.  There are times of flares and extreme pain and at best just times of pain.  There is no remission.

So what to do? I hope the next 12 to 24  months will be a time of adapting to this disease.  I want to get the most out of the "good" years of mobility that I have left and spend as much time doing fun stuff with Scott and the girls.  I will address more about my future with RAD in part two.