Visit with Physician's Assistant

Appointment disappointment: n. 1: a despairing feeling which often occurs after a medical appointment; 2: often a result of feeling misunderstood or having been treated with skepticism by a doctor or technician

From Kelly, author of the RA Warrior blog and this RA Warrior post

I'm beginning to realize I feel this way, to some degree, every time I see my PA. It was worse than usual yesterday.

I go to a clinic because I have no health insurance or income. What I do have is retirement savings that prevent me from qualifying for Medicaid. That means I should cash in my retirement fund, run through it and wait five years until I can prove I really, really have no assets. Yeah. Right. How does one live with a chronic disease which has no cure for the next five years? Please tell me how best to do this, and I will gladly let the state of Michigan know what to tell applicants who inquire.


Back to my appointment . . .when I am finally called into the area for exam rooms, the nurse asks me my DOB. I reply. He offers to push my wheelchair, which I gladly accept because my arms are too weak to push the wheels. (I usually propel myself with my feet.) He maneuvers me into a room.


"What's your date of birth?" he asks, sitting down with his laptop.


A portent of things to come? Is it his memory or a test for me? Is he even listening to what I am saying?



We follow the usual procedure of temp, BP, heartrate checks. "What medication are you currently taking?", as he looks at the form I just corrected as to current meds. I explain what was inaccurate about their computerized list. The change to my iron supplement intake was not noted. A prescription was on the list for medication I had never taken.


"Are you in pain today?" Yep, like always. "How would you rate your pain on a scale of 1 to 10 . . ." blah, blah, blah. (He must have missed my pain post with the new guidelines!) "Can you describe the pain?" Gee whiz golly, yes, at length. And it's apparently nothing interesting as he keys away on his laptop. Is he keying what I am relating? No questions, head nodding or any other affirmation I have an attentive listener under my spell. Oh, well, the PA will be here soon.


I am anxious to learn whether or not I qualify to receive Humira at a reduced cost. I filled out the paperwork request to the drug company last November. After 2 months, PA had finally signed the form and office was supposed to fax it two weeks ago. I have been surviving on pain medication and prednisone. They both treat symptoms, neither treats the   RAD.


The PA finally comes in 30 min after my scheduled appt time. The first thing he says is I have been approved for Humira. Thanks to Buddha and everyone else! Finally some progress.


My blood work is not good for the iron - count was 10 at the time of my last visit. That is down from 14 the previous time. (A count of 15 is average/normal) So my iron supplement had been cut in half when the count was 10 two weeks ago. Damn. He wants me to see hematologist to see what can be done about this anemia.


I was really looking forward to an informed conversation about taking methotrexate in combination with the Humira. About 10% more patients respond positively to Humira when they are administered simultaneously. No go on mtx with the iron problem. Stuck in limbo again until the Humira is delivered to the clinic.

He also wants to refer me to a rheumatologist. Apparently, he has not found one with whom he can consult regarding my treatment. I am in agreement on this one. I need to have a current diagnosis from a rheumatologist to have any hope of receiving SSDI. (A conversation with a lawyer is a future blog topic.) In the meantime, come back in four weeks.


"I wish I could do more to help you."


I go to check out, pay my measly little co-pay with money I am grateful my daughter and son-in-law gave me and get my receipt. "You're all set. We'll make an appointment now." Hey, wait a minute! Where is my prednisone refill? I have to take prednisone every day until I am weaned off of it now. It's going to be my bridge drug until the Humira (fingers crossed) kicks in. I had exactly enough prednisone to last until this appointment. The clerk goes tearing down the hallway to find the PA. He comes back an writes the RX. Hurries off to his next patient.


I look at the script and show it to the clerk. "How many pills is this prescription for? Does this say '20'?" I ask. That's what she reads, too. "OK, I have to take this everyday. Make that appointment for 20 days from now, please." I can play this game. I'll be out of pain meds by then also, so hope they call me back for the Humira before then - or I'll have to get another RX for that.


You know what? I'm in no shape to be doing their job. Can't even get them to listen to me. I increased the pain scale rating I gave them by one, to let them know I am not feeling better. Oblivious to my increasing discomfort. The anemia (and low vitamin D) are known consequence of RA. I have been going downhill again since the prednisone burst dosing ended. Ten mg a day is not enough. My fingers are aching again, the index fingers are stiffening up, left thumb continues to slip out of joint. Large muscle groups are better, but now, the feet are aching all the time again. Along with the right elbow and my neck. The brain fog RAers talk about is for sure increasing.


I'm not asking for an increase in pain meds. I'm not trying to be difficult or unreasonable. I'm fighting to believe you really could do more for me.


Appointment disappointment.

How much does it hurt?

The last post was about aching feet. This is just an example of one of my current discomfort issues.

A person has to laugh when it gets bad. I mean really bad. Like I hurt too much to cry anymore. I need to laugh.

Please take a look at this link. It describes pain in a way we can all relate to!

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

I brought it to my doctor.

Oh, my aching feet . . .

My daughter has been away from home for three days. The kids are off school for three days. She's due home tonight and no one has done any dishes for three days. Since my son-in-law works 10-12 hours a day, I decide to make my move and start washing the dishes.
The 14 yr old and 11 yr old remain oblivious. This peeves me. I wish they would recognize how tired she'll be when she gets home, how much a clean house would mean to her.

It takes me 3.5 hours to do 5 sinks of dishes. My feet are killing even though I'm sitting on a stool most of the time - have to lean on my feet quite a bit. I am resting between each sinkful,10-15 minutes. "The Fisher King" is on TV. I have to give up with another sink of pots and pans to go. By now, my left wrist and right elbow hurt with every move I make. Not good.

This all makes me think about a great website I found. It was a link from a comment on an RA blog. The woman who started the website has difficulty finding shoes to fit her painful feet. Sound familiar? Visit this site:

http://barkingdogshoes.com/

The shoes are so stylish! Many brands. And there are a LOT of websites selling the shoes with different prices. They aren't cheap, but it goes to show there are alternatives to Birkenstocks. And some are even cheaper than Birks! There are quite a few pair already on my Amazon Wishlist so I won't forget where I saw 'those really cute shoes'.

Life on Meds

I've been trying to do more around the house. Trying to stay as active as I can. I was not smiling when I went to see the PA. Had been off prednisone for almost a week. The person who was supposed to contact the drug companies about Enbrel and Humira could not find any evidence she had ever faxed the application to them. The application we filled out together at the end of November.

I have been taking 10 mg prednisone every am since then. It should have been prescribed as 20 mg. Back on Vicodin with aceteminophin. That does zero for the inflamation, just treats pain. The PA is still refusing to give me anything with ibuprophen. Maybe he'll reconsider if the last blood count is better. The Vicodin was written as 3 times per day. Same pill I was taking 4 times a day before. I have to take it 4 times per day or it is quite painful in the morning. Pain, not just stiffness.

I've been reading more about how to do things and what NOT to do to prevent further joint damage. Cleveland Clinic and Mayo Clinic both have some stuff.
Meanwhile, I can now balance on my two feet without holding onto something. I made it into the house from the car without a 'boost' up the steps from Jen. It feels good to have some strength back. Or enough red blood cells to oxygenate the muscles. I think it's more the prednisone than the iron - I couldn't get up the steps at Christmas.

The big job next week is to find a local lawyer specializing in SSDI.

Prednisone

So I was pretty depressed at my January 3rd appointment. It’s been 2 months since I began seeing the PA. I’ve been told I cannot take NSAIDs because I have anemia. The PA has not heard whether or not I’ll get Humira or Enbrel at some kind of affordable cost. Vicodin has not touched my inflamation although it dulls some pain if I take it faithfully. I am still defiantly taking Advil as needed for pain and inflamation. I left the office with a prescription for prednisone. I’ve had dose packs before and they really helped.

I was shocked that I would be taking 6 10 mg tablets the first day. The most I ever had in a single day is 1/3 that. It was after 5pm when the prescription was filled. I decided to start on the morning of the 6th. I had to prepare myself for a huge eating binge and becoming a real bitch by the end of the week anyway.
It is now the 13th. I cheated a bit and split the last pill in two instead of taking 3 pills the last 3 days. Just to taper it off. And the treatment has worked to some extent.

The first day, I had a headache bordering on a migraine after the 5th pill. I stopped and took 5 pills the second day, too. No sense ending up in the emergency room with a headache. The second day I didn’t notice anything - except I slept better. The third day, I noticed my brain was less foggy, I had more interest in what was going on around me. I could be attentive to other people.

I am doing things I have not been able to do for a while:

• Picking up a coffee mug using only one hand.
• Standing up from a seated position without counting and rocking.
• Standing up on my feet for more than 3 minutes. I stood for 10 minutes today while I assembled my lunch. I picked up the kitchen after the grandkids’ breakfast yesterday.
• Have enough grip strength to open my coffee ground pod
• Seal a plastic zipper bag, even if a joint in my thumb displaces
• Bent all of my fingers without pain today.
• Wore rings I haven’t had on in over a year

I’d like to go to Target or the grocery store tomorrow. Just to see what it’s like getting into the car. And the house.

I thought most of the swelling had disappeared. Since I can wear the ring my daughter made for me twenty years ago, since I could take in the straps on my sandals two buckle holes - I guess there was even more inflamation to be calmed than I thought.

I do not have the mood swings. My last prednisone pill is tomorrow morning. I am very afraid I will just slowly start slipping back into inactivity again.

Before Prednisone (cont.)

The longest I’ve slept at night is 3.5 hours. I generally sleep 6 hours a night altogether. I have to eventually wake and sit up to take the pressure off my aching shoulders when prone. I am beyond being able to wake up, feel rested, and stretch the kinks out. The ‘kinks’ don’t go away. I’ll sit on the edge of the bed for 15-30 minutes before I start the day by dressing. I can no longer stand or walk without a walker.


I go through the same process to get up from and sit down in a chair as I do in the middle of the night. Usually rising from my lazyboy. Which rocks. Which just adds another complication when what I really want is stability.


At best, I can usually manage about 3 continuous minutes on my feet before I HAVE to sit down. My knees are ready to spontaneously bend and my feet are ‘on fire’ at this point. If I’m standing on the tile floors in the kitchen or bathroom, my legs have a tendency to “lock” at knees and not want to move. Which means I’ll tip right over if I’m not holding onto something for balance.
I can barely hold my silverware. I can barely lift it. It feels heavy. It’s so heavy it makes my arm and wrist ache trying to hold it up off the plate. So, I put the utensils down between bites. Making a motion to turn a spoon or fork toward my mouth torques and HURTS. Lately, I have a sharp stabbing pain from my wrist extending halfway up the outside of my arm to my elbow. Pretty soon I will not be able to cut my meat. Every finger except for my ring fingers are inflamed to the point I cannot make my nails meet my palm. I cannot open or close a zipper bag, a “Pull Here” or a “Tear Here”. Resealable is a joke, as is Tupperware. A blister pack better have something pretty indestructible inside by the time I break into it.


It’s taking longer and longer to cut and measure everything for my granola and trail mix. Breaking it down into chunks ( take out ingredients, rest, gather utensils, rest, set up work at dining table, rest, chop dried fruit until fingers/wrist can’t move, rest, chop some more, stand up to unlock knees and hips, measure, mix and bake, rest, package) I can make granola in an hour and a half, trail mix in about an hour. Used to take me 10 min total to prep, mix and package trail mix - just a year ago. I plan all day when I cook something. A sandwich becomes at least a 2 step up/down/rest process.


I use a different aluminum walker outside the house that’s smaller and lighter for transport. I think it takes 2-3 minutes to get my coat on. Closed toe footwear no longer fit my feet without pain, so I wear sandals and socks in the cold months. It takes 5-7 minutes to get to the car if it’s literally parked outside the front door. There is a six inch step down from the house at the door, a sideways shuffle on the porch to clear the way for the storm door to close, the width of 6 feet to the edge of the porch onto the driveway and the car door. The porch is 8” off the driveway. I balance myself by leaning on an aluminum porch column to edge my foot down onto my stronger leg. Then I hobble a couple of steps to the passenger door. Six months ago I could stow the walker in the back seat and hang onto the car to get back to the front door. Now I can only just manage to turn around and try to get my rear up onto the seat - which is two inches above my rear end. Again, I take a deep breath before I try to bend my left leg and twist and lift it over the runningboard. The Vue is at least lower than a truck. I do not know how much longer I will be able to do this either. Half the time I have to grab my pant leg to lift my leg and complete the motion. Get the remaining leg into the car. Tell whoever is waiting to “spot” me I’m OK. Close the door. Find the seatbelt. Hope I can latch it myself. 
This is followed by a car ride usually long enough for my joints to begin stiffening again. And I have to remember the car is far enough off the ground I will be falling out of it to stand again.
When we get back home, I can no longer grab onto the column on the porch to get up that 8” step. Or up the next step into the house. Someone has had to give me a boost by standing behind me and lifting/holding me under the arms since Thanksgiving. Only two months ago I lost this ability.


I leave the house once a week at most. I go out even less now I need a wheelchair. It's too much trouble to get it into the car and then it takes up half of the cargo space. I can no longer push a shopping cart in the store and use it for balance. I cannot even use the walker to get into the store. Someone usually goes into the store to get me an Amigo. I cannot go into a store that doesn’t supply Amigos. It’s bad enough getting the wheelchair out at the doctor’s office.


How many people are standing in line to take me somewhere when it takes this long and I am exhausted by the time I’m seated just prepared to go somewhere? 

Before Prednisone

Last week, January 3, I said my pain was at a 7 when I was at the Dr's office. What that doesn’t say is even more revealing.

The night before, I had been seriously wondering how many more times I could get up in the middle of the night to go to the bathroom without assistance.

I already wear a Tena pad constantly. I do not always awaken with an urge to ‘’go’. Sometimes I wake up because I am in pain, or in discomfort or I’m just restless. I have learned through experience that I have to get to a sitting position before I’ll know if I have to urinate. It can become quite intense the moment I become vertical. So . . . can I slip my bent legs off the edge of the bed enough to get my feet free and rock myself back and forth (head to toe) to get up, or , if my elbow and shoulder are strong enough, can I leverage myself up?

This is where I started to become worried, wondering. My shoulder and elbow hurt so much. I can’t use the walker to pull myself up. How close am I to having to call out to someone to help me sit up? Tomorrow night?

I have to sit on the edge of the bed for up to 5 minutes before I move to get up. Standing has become iffy. The Vimodo pain pill has at least allowed me to unbend my legs without worrying I will dislocate a knee - that’s how much the swelling has gone down. My trusty Birkenstock sandals are always parked on the floor under the walker so I can slip into them. (I cannot walk without shoes with arch support. Forget barefoot, even on carpeting.) Now I just have to be able to bear listening to the bones in my left knee rub together like knuckles cracking until the legs are extended straight enough to walk on.  Whether or not my feet are pointed straight in front of me. Actually, I no longer know when my feet are pointed straight; my knees are twisted enough I have to look at my feet to make sure. This puts the least amount of strain on my knees when I do stand.
OK, grab onto the handles of the walker and start counting.
I literally rock back and forth like I’m in a rocking chair to get enough thrust to get my butt off the bed. Before I took Vimodo, it took until about an 8 count. It’s like a 3 count now. And then every muscle tenses with the effort to stand and simultaneously try to block out the sound of the bones crackling (because you know that can’t be any kind of good news and it’s too much to contemplate right now). Try to put most of my weight on the stronger leg, whichever it is at the moment based upon knee pain level and how much each leg will straighten. Some of my apprehension has disapated as swelling has gone down. On the other hand, I’m getting weaker and weaker. This time, the 3 count isn’t enough to overcome the inertia. I deliberately relax my muscles for a few seconds, take a breath and grab the walker handles and start all over again.
I’m standing, even if I’m hanging onto the walker for dear life, hunched over, forearms flush along the handlebars bearing a lot of weight. I have rheumatoid nodules near both elbows from doing this.  Be still as I survey my body legs, knees and feet - am I steady enough to take a step yet? Which foot first? (Which knee is most steady, which foot hurts least?) Take a step. I do not fall. Do not think about it if it hurts a lot or a little, just don’t think about the pain because I have to keep moving forward, forward, forward. Move the other leg. Is it easier to move this leg? (Forward, forward, don’t stop for anything). Two more shuffles and the walker is at the bathroom door.
I’ve moved 3 feet from my bed. I have to get the walker 2 feet into the bathroom before I will get to the entrance. Then I have to turn it around 90 degrees to back up to the toilet.
(Have I mentioned I have to go really bad? Have I mentioned I am coaching myself under my breath “You can do this, you CAN do this, you WILL do this, . . . “?)
Shuffle my feet around slowly so the kneecaps don’t wiggle around, still feeling them sliding around in the knee. Simultaneously rotating the walker. It’s a tight fit in a 4 ft wide bathroom, but I have it down to a science. And I can always leave one of the pocket doors open at night. Time to sit down. Assess whether I can let go of the walker with one hand while I grab onto one of the assist arms on the toilet. OK. Just keep holding on to something somewhere because we’re none too steady here. Move the other hand to the other arm. Squeeze as hard as I can with my hands and lower down to sit. It hurts my knees, but the seat is higher than the bed, so it’s more comfortable.
The pressure is off my knees, legs, feet, arms, bladder. I can evacuate and rest. Breathe! I made it!!! Get the toilet paper ready. Ouch, my shoulder and elbow do NOT want to bend and twist. Take a breath and get it done. Wait a couple of minutes. (Am I really done going?) Must use left arm/hand because right arm/hand is no longer flexible enough to ‘reach’ to wipe myself. Sorry, probably TMI.

Get ready to stand up and wash my hands. Standing up again is almost always easier because I’ve done it once now. So I get up again. And shuffle and rotate. My feet are KILLING ME. I really cannot stand to let go of the walker to wash my hands. Forget the hand washing. I have to shuffle those few steps back to bed - and rotate me and my walker around, hang on and lower myself onto the edge.

Sigh of relief.

It has taken me up to 20 minutes to do this. Now all I have to do is scooch around and lean to my left while I lift my right foot onto the bedrail, then onto the bed. My leg is very heavy. Sometimes I just use my arm and hand for an assist. Now, can I get the other leg up?????

OK. I’m lying down on my left side. I leave the tv on for a nightlight and to lull me back to sleep. I’ll be up in 2 hours to do this again.
So I sat on the toilet in the middle of the night wondering how much longer it would be before someone has to half carry me to the toilet several times a night. It was pretty depressing.

Anemia - Part 2

A blood lab tech comes in at 5am to take more. I tell him I'm supposed to have it drawn at 8am. He says I'm on the schedule and takes blood anyway. I tell him I have a shunt. Can't use it because they can't use the 'innie' for outgoing blood.

Time to try to drift off again. Or go to the bathroom.

Eventually, they take blood again. Eventually, the doctors begin to make the rounds.

They want me to stay. The bloodcount is up to 9.7 and that is more than double the admission number. (That must have been around 4 - they wouldn't tell me.) They want to scope me down and up to look for sites that are bleeding. And possibly do the 'swallow the camera' pill to check the small intestine if they don't see anything on the first 2 tests. The head honcho gastroenterologist must have mentioned cancer about 3 times as a possibility to eliminate.

I am feeling like anything but an intelligent human being at this point.

I have been taking NSAIDS in the form of Advil and Vimovo. Way more than 1000 mg per day before I started the Vimovo. I went through this a few years ago when I was taking Aleve. I had the scopes. They found irritation and nothing else, no active bleeding. And that was when I was throwing up brown stuff.

I HAVE RA.

I have been in the hospital 18 hours with 2 classic symptoms of RA (anemia and low vitamin D) and no one has: 

• given me any pain meds
• shown a rheumatologist the door to my room

I took the gastro's card and checked out of the hospital. The admitting Dr's stand-in had to release me. She insisted I could not be treated by a GP or PA for rheumatoid autoimmune disease. I can ONLY be treated by a rheumatologist. She gave me a prescription for Vicodin with Aleve. Even though she is not a rheumatologist.


I'll continue to take iron pills and vitamin D and see my PA. Who at least knows I have RA, even if I have to wait for him to learn more about it by treating me.

Anemia - Part 1

My PA told me to go to emergency after my last appointment. He was surprised to see my haemoglobin count was 3 on my initial bloodwork in Nov.
Somebody really dropped the ball on that one. Normal minimum is about 12. I always used to be around 15. A 3 is like, um, dead.
He sent me down the hallway for bloodwork again. This time they called the next day and told me to go to emergency. My daughter was at her job tutoring a homebound student. The receptionist on the phone wanted me to call an ambulance.
OK, wait a minute. I lived with a '3' for how long? I have no insurance. I can't pay for the ambulance (figure at least $800). I think I'll survive an hour or so until Jen gets home.
Off to the hospital. Only took a little over another hour before I was seen by someone. Who took more blood. Another hour goes by. (I kind of expected this timetable as my dad had been in the hospital with the same problem earlier this year.)
Low blood count, again.
The Dr asks me if I'm dizzy every time she comes into the room. Well, yeah, between it being about 80 degrees in this room and the power of suggestion, I could have answered yes. You may be actively bleeding, we need to do a digital exam. OK, been there before, have at it. Another half hour for results.
Finally, one test that's negative.
We're admitting you to give you blood transfusions. Great. No bed yet. Jen goes home because it's after 10pm and she is exhausted. The nurse eventually starts the blood transfusion in ER because the nurse getting me a room went to lunch.
Gee, when I manage to get transported to an actual room, they do all of those diagnostics all over again plus a nursing assessment. I'm hooked up to an automated heart monitor/bp/oxygen machine again. The comfort level of the bed is the pits. The transfusion bag is almost done - get the next one going. Give blood again for more tests. One bright spot is that they allow me to go the whole five feet to the bathroom door as long as someone is there to watch me and I pull the cord for assistance when I'm done. Trust me, I am as afraid of falling as they are I'm about to fall.
Lie down and watch the bag. I'm pretty awake. Nursing shift change. Get assessed again by the new nurse. She unhooks the empty bag from my shunt and tells me they'll draw blood in 6 hours for another blood count. I kind of drift off.