Ode to RSD

My holiday ode to RSD – The Twelve Days of RSD.

-On  the first day of Christmas My RSD did give to me,

…A diagnosis of a lifetime in pain.

-On the Second day of Christmas my RSD did give to me,

…Two doctors fussing and a diagnosis of a lifetime in pain.

-On the third day of Christmas my RSD did give to me,

…Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime in pain.

-On the fourth day of Christmas my RSD did give to me,

…Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime in pain.

-On the fifth day of Christmas my RSD did give to me,

…FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime in pain.

-On the Sixth day of Christmas my RSD did give to me,

…Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, TWo doctors fussing and a diagnosis of a lifetime of pain.

-On the seventh day of Christmas my RSD did give to me,

…Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

-On the eight day of Christmas my RSD did  give to me,

…Eight muscle spasms, Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

On the ninth days of Christmas my RSD did give to me,

…Nine acupuncture  sessions, Eight muscle spasms, Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

On the tenth day of Christmas my RSD did give to me,

…Ten electric full body shooters, Nine acupuncture  sessions, Eight muscle spasms, Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

-On the eleventh day of Christmas my RSD did give to me,

…Eleven online support groups, Ten electric full body shooters, Nine acupuncture  sessions, Eight muscle spasms, Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

-On the twelfth day of Christmas my RSD did give to me,

…Twelve people in a store line shoving, Eleven online support groups, Ten electric full body shooters, Nine acupuncture  sessions, Eight muscle spasms, Seven Lumbar blocks, Six sessions of physical therapy, FIVE golden prescriptions! Four friends a doubting, Three days of no sleep, Two doctors fussing and a diagnosis of a lifetime of pain.

An original  by Kathy Buck. I wrote this at 4:30 a.m. and  I dedicate this to all those with RSD and to the friends and family who offer support to us.

I am a bit, no – extremely bah hum bug this holiday season. It’s been a year of health issues and mental hopscotch in dealing with breast cancer and having RSD. I can only look towards the future and hang onto  hope that my health may improve and my mental wellness back to somewhat normal levels. I’d like to wish all of my readers a very happy holiday season, may the love of you’re family and  friends give you peace, warmth and comfort.  May all of you endure the cold temperatures with strength and may you’re heating pads take the chills from those bones and muscles and give you  some relief.

Gentle hugs to all!

Aftermath of Movement

“Move it, or lose it” is a saying that many of us with RSD live with. It is important no matter how much pain we are in to keep moving. How do you explain to the the non-RSD person the pain of movement or worse, the pain that follows most any activity?  For myself, even mundane movement around the house can cause flare ups later. Spending two days up and around with full body movement for over four hours? Insanity. It might not hurt as bad while I am moving, the waves of pain come later. I was out for Thanksgiving on Thursday, just the hour and half drive and sitting in a restaurant, and then the drive back was a killer – but 3 hours of walking and window shopping a day later in cold tempatures? A killer. Let me walk a non RSd person through my hell.

The Outing.

Since the colder tempatures outside, I am less active. The cold affects people with RSD just like it would to a person with arthritis, only arthritis more well known but the pain levels of RSD much higher.Anyways, my hubby was restless and wanted to go do something. I was feeling pretty good so agreed that we needed to get out and do something together. I spend far too much time in the house. Money is tight, so our adventures are cost wise pretty cheap. We both wanted to go to the art museum in Milwaukee, sadly the cost of gas, parking and admission was over budget – plus we’d probably want to stop out and eat.  We decided to head to a little town and do some window shopping. The temperatures in the upper 30′s – low 40′s, I bundled myself up, wearing my special socks under my jeans. We headed for a town called West Bend, I remembered they had a delightful little downtown area. The entire downtown main street was about 8 blocks – both sides. This would be a great undertaking for me without my wheelchair. For those new readers, I have trouble walking a block – my legs shake most days and I fall. It was an odd RSd day, a good one – I felt really good and was walking without a cane – off we go!  I was so excited to be out of the house and spending time with my husband, we are best of pals and or time out together is so rare now.

We hit the streets of West Bend like two young bright eyed kids. We strolled the downtown area and stopped in at several shops. I was so happy to be moving around relatively pain free and without a cane.  All in all we spent about two hours strolling around the shops, I was starting to feel a little sore. Mike was hungry so we stopped and got something to eat. As usual Mike ate half my meal as well.  Almost four years of marriage I’ve learned to order a bigger portion so I get some too. HA HA.  After a lunch, we stopped at PetCo to visit the meow meow kitties.  Mike wants another cat, I am refusing to give in. So we met Rascal a one year old male tabby. I made Mike put him back!  After Petco we skipped over to Goodwill, I was still moving pretty good, my legs starting to get a little wobbley. I love Goodwill, I found a real nice sweater and a pair of jeans for eight bucks.  As we left Goodwill, my legs buckled – I had pushed too much, time to head back home. I was in awful pain.

The Aftermath – A peek into pain

This is the part many do not understand about RSD, the after math of movement to the person infected with this cruel disease. On Thursday (Thanksgiving) I had been up and moving around for about 3 hours, plus driving time. We stopped by my sister and I had commented that I was starting to get sore. She said” You’re just sitting, how can you be sore?” For me, sitting on a chair counts as being up and around. My hips and lower back are greatly affected by the RSD, laying flat is the only relief I get and that is minimal and only gets better if I take pain medications.  Anyway…The after math of Saturdays movement now setting in, I could not wait to get home and take some medication.

We get home and I immediately change into comfy clothes and take my pain medication. By this time I’d rate the pain at a 10+, I waited too long to take  pain medication. An hour later and I am fighting tears. My entire body aches, these are not aches from lack of movement either. My body feels like I was hit by a truck! My bones feel like they are going to explode in my body. The muscles feel like someone is in there twisting them like a washcloth. Come on pain pill- work. The pain not just in legs, I wrenched in full body pain.

About an hour and half after taking my pain pill, I’m still at a high level of pain. I’m now in tears, it’s so bad and not easing. I decide to take a 1/2 more of pain pill, Im staying within dosage levels. The thing about pain medications? they are meant to manage pain and keep it at bay, not solve increased pain levels. Forty five minutes later and the pain in becoming tolerable but I’m a stoned zombie. The tears now come hard as I lay on my bed alone.  I want to be alone, I can’t stand my family seeing me all drugged up. Pain medications tend to have odd effects with me, how can I explain? Even over the counter medications like Nyquil make me loopy. I’ve now just ingested 8mg’s of Dilaudid , a narcotic that is 3-4 times stronger then morphine. I’m in a haze, the narcotic causes an almost euphoric feeling, the pain now down to a 2-3. The aftermath is now me crying because I am now sat having to be stoned after a time I had enjoyed. This is my life now. I’m crying because I so enjoyed the time out with my husband. I’m trying to be brave and endure the pain and keep it silent, I can’t. I’m balling, big tears floating down my cheeks. Some many wonder why crying if the pain is releived or at a lower level? It’s a question of being lucid to ones own level. For myself, I do not feel very lucid on the pain medications.  It’s really hard to explain my emotions. I feel like the entire day was a waste because now I’m drugged up, I just do not like being around people when I’m on the pain medication – including my husband, I just do not like being seen that way.  My price for spending an enjoyable afternoon with my husband doing something that anyperson takes fro granted? I’m now alone in room dealing with the fact that I am in pain and having to take pain medication to deal with the pain. For some this maybe n big deal – C’mon Kathy, you have a chronic pain condition, go easy on yourself? I guess I feel like the whole afternoon was a lie and the other part? My husband having to see me suffer, this disease affects him too. He’s now feeling bad like he pushed me too far and worse anytime we do anything this is the end result, a wife smacked out on drugs. He spend the rest of night in the living room, I in the bedroom. He checked in on me periodically but like I said I like to be left alone when I drugged up. Why? because I am not myself. I often slur, can’t keep a straight thought, I mumble, I groan, I ramble, I forget what I’m talkin about and stop mid sentence. It’s like being sat next to the town drunk who’s telling you the same story for the third time. Cruel disease this RSD.

Moving Forward

When a person with RSD forces themselves to get out and move, we generally pay for it dearly later.  It’s a tricky method of finding the right balance of movement , It’s even more an obstacle to get those around us to understand.  One day I feel like I could leap a tall building, the next day I struggle getting to the bathroom timely.  It’s not that we do not want to move and are lazy, many times the person with RSD has to evaluate themselves on a daily, even an hourly basis.  A person on an RSd support group channel stated “Life with RSD  is like a balancing act on a sharp knife” or something close to that was stated. I could not agree more.

I’m doing a little better today, still sore and achey. I’m using my cane even for just around the house, my legs are very wobbley and giving. I’m thankful today for my ability to rise and walk the distance I did yesterday without a cane. I am hopeful for more days like that. It’s acceptance thought that all days will not be like yesterday and the aftermath is just something I have to suck up too. Movement is so very important to the person with RSD, the pain last night was worth it. The bad pain has passed, today is just more aftermath of excessive movement. I pretty much have done nothing today beyond cook some rice and chicken, it was hard to stand for that!

What did I learn about over doing it? To be better prepared next time. To use more caution and listen to my body at first signs of being sore. To learn to accept my cane and be prepared to bring my wheelchair for long walking trips. I’ve yet to bring my wheelchair out of the house. I intentionally avoid any encounters that I might need it at. For instance, this holiday weekend some of my high school classmates were in town and there was a get together at a small local bar. I did not go again. My legs are worse after 3 pm, I feared not having a place to sit at the bar on a Friday night and needing myu wheelchair. Im not ready for people to see me that way, especially people I know. I guess that is the real demon I need to conquer – accepting myself , perhaps that is why I over did it Saturday, denial.

Off I go back to lay down -  still cannot sit up for too long.

Risky Business

I use to get so angry with my dad and they way he handled his diabetes. He’d eat all the wrong foods and justify it by taking more insulin. I would tell people that I hated watching my dad kill himself, because that was really what he was doing. I vowed as a diabetic never to put my loved ones through that and for the most part I am a responsible diabetic, I eat properly and check my blood sugars often.  My dad died when he was only 57, years of running maple syrup through his heart caught up with him. He always said he’d rather live and enjoy life verses being miserable and not eat the things he wanted. I had to learn to accept that it was his life and his choice, still though it is not easy to watch a loved one literally make the choice to kill them self when a treatment is available to extend that life.

I now have a better grasp on what my dad was going through mentally. I have had to make some difficult choices about my own treatment and life. The worst part with these choices is the dealing with loved ones responses, I think I now know why some days my dad would not answer his phone. Most likely one of us kids calling to give him grief ” what did you eat today dad?” Sheeshus, as an adult who needs that.  Since the first day I told friends and family that I had cancer, I’ve had to deal with well meant advice. No one reacted this way when I announced I had RSD, yet mutter the words cancer and woah nelly, circle the wagons – she’s dying.   I do not even think most of them know what type of cancer of have beyond that it was located in my tit. In fact I’d bet my stash of chocolate, 1/2 of then couldn’t tell ya which titty, but just that its cancer and cancer kills.

My Meeting with DR.

It’s taken me almost a week to settle down to write this, I needed to obtain some objectivity. I was pretty angered when I left the doctors office. He didn’t charge me a co pay for the visit, how nice.  For those just reading I have breast cancer. Long story short I made the choice to skip radiation based on the fact that I also have RSD. The radiation can cause the RSD to spread to my chest.  The doctor wanted to meet with me to discuss treatment options.

Doctor strongly advises that I get a double mastectomy now. He threw out a bunch of statistics about cancer coming back and blah, blah, blah. I can appreciate the good doctor doing his job and advising me. There is a more burning issue and I’ll get to that shortly. In the end I have decided, better said “we” have decided not to risk the RSD spreading. I will get check ups and if the cancer does come back i will then opt for the double mastectomy. Many of my family and friends not agreeing with this decision.

Insert catchy Subtitle

Okay, what really fueled my engines? The good doctor. All doctors I have been dealing with. Prior to the Lumpectomy I had informed the doctor of my RSD. This is a serious neurological condition.  The doctor performed the lumpectomy with no precautions to the RSD.  Shortly after the surgery I started noticing  signs of RSD in my left arm from where the node biopsy was performed.  I told the doctor, he brought me in to check for lymphodema, the test was negative. So the doctor refers me to a massage clinic and tells them I have fibromaylgia. Whut?  Fast forward now to this latest appointment.  I’m explaining to the doctor my reasons for passing on the radiation, I mention the RSD and how radiation has been shown to be a cause of RSD and thus the risk for spread to my chest. The doctor admits he knows little about RDS, Yes he says RDeee-S and repeats RDeeee-S several times.  I then mention that before my surgery a special block should have been given to prevent any RSD spread. I go on to explain RSD and the mechanics. I only first learned about the block from a blog reader. The doctor goes on calling the condition RDee-S. Really? Okay an honest mistake, but I am suppose to trust any further  treatment to a doctor that knows nothing about my condition? NOT! And quite frankly I am insulted that he is calling it RDeee-S and not RSD, I mean really even after I called it RSD back to him?

Silly me I thought this doctor would have my medical care in his best interest. I don’t get it. I use to run a business, I did branding campaigns for small businesses – it’s marketing.  When creating campaigns I researched everything I could about the business and the widgets they produced.  Yet this medical professional researched nothing about my condition and performed a procedure that caused my condition to worsen. If I created a careless campaign, I’d be fired. Guess what? I fired this doctor. Unbelievable.

The RSD Doc

Prior to meeting with my cancer doc, I had a appointment with the doctor who has been treating my RSD. I had explained the whole cancer treatment situation to her. Know what? She completely agreed with my choice not to have the radiation or the double mastectomy at this time.  Yes, I went to the cancer doctor pretty much with my mind already made up.  The RSD doctor had mentioned something very important, she said; “if this doctor is not understanding you’re RSD then we’ll find one who does.”  Very important advice that validated my feelings that my RSD was not being taken serious enough by any of the doctors treating my breast cancer.

When will the medical community wake up? So many do not understand RSD and refuse to learn about it. I’m angry at myself for trusting my care to a surgeon who thinks he knows everything and an oncologist who just shrugged his shoulders at me after I was in the ER twice in one day after my first infusion. Both of these treatments have advanced my RSD and neither doctor has a clue.  I should continue to pay them? More like a I should sue them for not having my best interests in mind. I now feel both were negligent in my care. I’m very angry. Some could say what choice did I have, it was cancer you had to have the treatments. Yes, but there were preventative measures that should have been taken in those treatments. I’m now left with RSd that advanced to my left arm from the surgery and, RSD that progressed from lower limbs up to small of my back form chemo. The oncologist said the effects would wear off, silly man – this is not the effects of chemo – it’s RSD and it is permanent. I still have trouble walking, I’m out of work and my home in financial stress.  I do not know yet how to explain my mindset without sounding like I am self loathing. I guess to put into perspective, would you go to the dentist to have a root canal done and end up with three teeth being pulled? If that makes sense.

It is Thanksgiving Day here in The USA, I’m up early writing.  I actually woke up at 4 am. Im happy that I slept again for about 5 hours straight, new meds. I am thankful for much in my life. Number one – my supportive husband. This has been a stressful ordeal on him as well.  I’m thankful for my son, who for the most part remains supportive and positive with me. He’s off getting me some coffee right now, I ran out two days ago and just have not been able to muster up the energy to leave the house. The cooler temps have made my RSD flare up something critical!

I think now is a good time to end this latest post. I’d like to thank all the readers for the constant support and kind words as well as helpful advice.

Round and Round

I’m trying to think of  clever opening for this latest post, nothing much is coming to mind. It’s been awhile since my last entry, life happening ya know and I guess that is a good thing. Some people, well one person I know says that writing is bad for me because it causes me to fixate on my health issues. I disagree with this mindset, writing helps me get in touch with what I am feeling. How does this help my conditions? I don’t know, but it makes me feel good.  I’ve been trying to keep busy these past few weeks. I have started a non profit support group for RSD, today we had our second group meeting – 5 people showed up, great folks all with RSD. I was as upbeat as I could be at the meeting, I’m great at wearing a happy face no matter how flippin stressed out I am. I got a distressing phone call this past Thursday.

Paging Dr. Bobby Wu.
Is it legal for me to print his name in my blog? Hmmm? I have no plans on saying anything nasty. Dr Wu was my surgeon for the lumpectomy, which also took a large chunk of my left booby – so it was almost like a partial mastectomy. I like Dr Wu for the most part. Anyways, his office called me Thursday. There are concerns form Bobby Wu about my choice not to have radiation therapy. The good doctor is now advising that I get a double mastecomy. Yeah – I thought I was moving forward as well.  The good doctor is concerned about the chances of the cancer coming back being more greater.
Radiation therapy is known to cause RSD – Reflex Sympathetic Dystrophy. I already have RSD in my lower limbs, hips, small of back and left arm. I should risk this crap going to my chest? I do not think so. The chemotherapy caused my RSD to progress from just lower limbs to upper limbs, I still have trouble walking yet this doctor wants me to risk RSD in my chest, I’m thinking RSD in my chest would further incapiciate me. But cancer could kill me. I do not know what to think. My mindset was to get check ups to watch for any cancer and if I got it back to then opt to have both tits hacked off, but I run the risk of cancer spread too. I’m so confused.

I spent most of Thursday evening crying. I’m emotional. Despite Chemo knocking me into menapause, I still get emotioanl during the time my cycle should be hitting and wouldnt ya just figure, it’s that time. I sobbed the rest of the day like a child being deneid candy in the check out lane. Yes, at times a full blown all out throw myself on the bed it’s the end of the world moments.  My husband waited until my wimpers calmed before sitting me down to knock some rationale back into my melon.  This is hard on him as well.

Do I really want to consider having both my boobs hacked off? No. I’ve had a troubled time accepting my physcial appearance since my left one was partially knobbed off.  I’ll be eblunt again, I was a bra size 38DD, well maybe a 40 depends on the bra style. The lumpectomy took my nipple area and left about a 6 inch scar accross my tit. Oh plus more tissue was taken then expected because another small lump was found. I ended up having two types of cancer – lucky me.  I’m well endowed but now my left tit looks like a partial loaf of bread, it’s square. Very hard to notice when I’m wearing a bra. My summer of letting em fly solo was missed though. Anywhos – my physical appearance does not make me happy. It’s so easy for anyone to say “well at least you still have you’re boobies” ya – now what would they say in response to suggestions to have them both removed? “You’re boobs or you’re life?”  Yes. My sister already whispered that to me. Of course I called her during my seperation of my mental wellness state. I always call her first, she’s brutally blunt and that is what I need.

So what am I on about? This might sound very odd to anyone reading, anyone who does not have RSD. I’d rather risk the cancer coming back then deal with the RSD spreading. The pain is horrible, I can’t imagine it in my chest. If I get the double hooter hack, the RSD will most certianly spread. It spread to my left arm after the first procedure. This may not make sense to a person who does not deal with chronic pain. I must sound crazy – I’d rather risk  the cancer coming back then endure radiation and or booby removal.

MY RSd after the Chemo spread to my upper limbs, hips and small of back. I’m in horrific pain most of the time now. I am able to move around for barely 2 hours in the morning and I have to go lay back down due to pain, generally by noon now I am taking a pain pill. My walking is still unsteady, it varies day to day. One thing has not changed, the length of time I can be standing, 15 mins and my legs wobble. Do I really want this to spread to my chest? Hell no. I’m incapacitated enough.

It took me two days to sit long enough just to thump this out.  Am I crazy for leaning towards risking the cancer coming back?  I am meeting with Bobby Wu Thursday to discuss. I’m kinda scared – I do not think he grasps RSD; Luckily though I have a appointment earlier Thursday with my new doctor that has been tending to pain management with RSD. I plan on discussing this with her as well.

It’s 3:05 am. I wish I could sleep.

Shout Out

I’ve had alot going in my world as does everyone.  I recently found out that my diabetes is causing the early stagtes of retinal dysfunction in my eyes, it’s early and treatable.  As I log my up’s and downs with my ongoing journey I have had some off the blog conversations with several of my readers. I’d like to take the focus off of myself and focus on one of those readers.

“Jane” – we’ll call her Jane for now. Jane, has been in touch with me since the early start of my blog. Jane has RSD and was recently diagnosed with Breast Cancer. My heart immediaetly went out to Jane as I knew personally the journey she was about to embark on.  Jane and I have had many e-mail conversations supporting each other. I like Jane.

I’d like to take this blog post and dedicate it to Jane and ask my readers to focus all thoughts and prayers on Jane. In an e-mail early this week Jane informed me that they have now found probable cancer in her liver – she is considered stage 4 cancer now. Jane was to have a biopsy today to confirm. The suspected cancer in her liver is not curable only treatable.

Please take a moment to pray or whatever you can for Jane.  She just had her first chemo infusion and is not doing well, and now has more then I can imagine to deal with.  Jane if you are reading, I opted not to mention you’re real name for privacy reasons, you are welcome to comment as yourself if you wish. I know my readers are all wishing you the best right now…and get back to bed and rest damnit. LOL

Namaste

Brutal Truth

My journey with breast cancer and RSD has been a long road or perhaps better said a wild roller coaster.  I’ve struggled with not knowing what to expect or why, that fact alone is the main reason I started to blog my journey – the misinformation given to me is now a personal ledger so others finding these musings may have a better light.  My main struggle with my journey has been the many doctors who for what ever reason are not completely upfront about outcomes of situations, I just do not understand a mindset of false hope. Perhaps it is because they are to be healers?  Whatever the reason it is my deepest feeling that these doctors could have been more honest with me VS giving me false hope.  A false hope in this manner to me is defined as such; A professional person having medical knowledge of endured treatments and a time line of what a result will be.

If you’ve been reading along with me you know that I endured four chemotherapy infusions. The first infusion caused horrible side effects  a few days later, so bad the I was in an emergency room twice in one day.  RSD is a neurological condition that effects the nerves, bones, muscles and skin. The drugs used in chemo are known to attack the nerves and bones, it was thought back then that the chemo was aggrevating the RSD thus the high pain levels.  I was put on hydromorphone to deal with the higher level pain. Hydros are a very heavy narcotoc, stronger then morphine just in case you want an idea of my pain levels. My oncologist shoveled out the prescrptions like candy, still though I monitored my intake only taking one or two a day.

My oncologist stated that the elevated pain would go away. He lied

The pain management doctors said the pain would subside. They lied.

It’s been almost five months since my last infusion, the pain has not gotten any better. Whats worse is the pain has traveled to my upper thighs and hips, was well as into the small of my back.  Nothing has improved, I’ve continued to decline.   I’ve held onto hope that the pain would subside, instead it seems that each day see’s no releif. Now I have friends and family telling me I am to fixated on the pain. No shit sherlock, Ican’t move around for 30 minutes and my pain levels shoot up. I’m wanting to gulp a pain pill some days already by 10 am it’s so bad.  Ican’t sit for more then 15 minutes at a time now –I’ve had to get up from here twice already.  Walking? forget it.  I spent last Monday at doctor appointments – hoy  boy did I pay later for that movement.  Any RSD’r can testify that current movement is painful but wait till later, it goes off the charts.

It’ll All Get Better – LIES

I had been complaining (reporting to the oncologist) about my eyes blurring. The oncologist said it was typical to experience blurred vision and tearing. Guess what? I went to the eye doctor for a check up. The veins behind my eyeballs are enlarged.  The start of diabetic eyeballs.  All this since chemo.  I have diabetes and my blood suagrs have been wild since the onset of RSD, the pain and anxiety makes levels jump.  Why though after all this time did this doctor not suggest I see an eye specialist – this whole time Im thinking “It’ll get better” NO it wont – damage is done. Im on a road to blindness now.  Piss me off. Why is it these doctors request a medical history?  Shouldn’t Dr Spock somewhere said “Hey you are diabetic, lets get you to have your eyes checked, this is lasting a bit long?” NOOOOOO.

So here I am the entire time thinking – this will all fade away and get better, it’s just the toxins from chemo raking havoc in my system. Thats what the doctor have told me!

New Doctor

A week ago I was in to see my general doctor for a check up, I’m part of program called “Lean You” within my hubbys insurance.  Following criteria gets discounts on insurance and gets me my diabetic stuff at no cost – it’s a great program that saves us loads of cash. So while in with the doctor she asks about my RSD. I go into a 5 minute rant about my ordeal with the last pain mangement doctor. She stops me and tells me of a doctor she knows that works with chronic pain.  I tell her I am intersted, she calls the doctor and explains my frustrations with being put on 24/ 7 meds…the new doc is willing to take me on.  wonderful news.  I get home and make the appt a few days later.

So yesterday (Monday 10/18) I see DR T.  I really like her and she is listening to me tell my story and is actually looking interested. She is blunt, I like this. She does agree with me about my pain medication and my wanting to take as needed. She does caution me though as to the fact that I am already on heavy narcotics and once I adjust to these there is not much to do to control pain.  This is the sad part. The funny part? She tells me I am an odd ball?  Why ? I prefer to wait until the pain is unbearable before I take anything. Most people prefer to take something 24/7 to keep the pain at a tolerable level.  Not me. I do not like that feeling all day. I like to be lucid for as long as possible. Anyone reading who takes meds 24/7 might be offended, sorry but don’t tell me the narcotocs dont make you feel a bit euphoric and sleepy – it is that I wish to avoid, I like being active and explained this to my doctor. I have too many things I wish to do yet, narcotics wipe my ambition clean.

Brutal Truth

Having been told that the elevated pain was a side effect of chemo I ask Doctor T when she thinks the effects will wear off? Dr T looks at me and says ” The taxotere is long out of your system by now, anything you are feeling is the result of permanent damage and the advancement of the RSD”  WHUT? I started to cry.  My husband is with me and grabs my hand. I’m crying now just writing about it.  For months I had been conditioned to think that the pain was just residual chemo drugs (taxotere) hanging in my system, now I’m being told that is not so and I will always feel this level of pain, it will most likely never get any better.  I just sat there sobbering like a child, tears running down my cheeks. My husband just clinching my hand and now asking why the oncologist told us different, he’s angry. RSD effects our loved ones too, thats why I asked him to come to the Doc with me, he needs to hear the bone truths as well.

So now I know that the chemo caused me permanent damage.  I’m left wandering why the oncologist continued the infusions, did I have any other options?  I’ll never know will I.  Why did  the oncologist tell me this would all go away? I know why, no knowledge of RSD.

I’m left wondering  if I have a lawsuit against the oncologist for wrecking me. Is it malpractice? I think it is – I was never given any choices or warned that this could end in permanent loss of my quality of life. My life now wittled down to not being able to work, and a life of pain meds – heavy narcotics HE put me on.

I”m crying again, time to go relax.

 

 

Family and RSD

Since 2007 I have been active on chat forums for RSD. As of recent I have active support group and give phone support to people with RSD. The most often asked question? “How do I get my family and friends to understand my condition.”  Hands down the most frequent obstacle. On this blog I can track search terms used to direct a reader to my musings, as of late many searching for search terms of non-understanding family with RSD.  I’m no head shrinker, I’ll share with you my experiences and how I deal with the doubting friends and family.  Dealing with RSD is very hard, dealing with people who doubt the condition is probably harder then the disease itself.

It’s Not All About You

One rule of thumb to remember, “It’s not all about you” in other words, if you are they type always flapping your wings about the pain you need to understand that loved ones are experiencing a different kind of pain. Loved ones (Family & Friends) are experiencing a loss as well. A loss, a change in what they understand. I call this the grieving period and grief has several stages that can last any amount of time.  I’ve renamed the stages of grieving to better fit, I call it RSD Awe. These are phases we all go through being diagnosed but it also important to understand that loved ones will also have emotional challenges.

RSD AWE Process

1. Shock & Denial Much like the RSD patient recently diagnosed a loved one can go through the same emotions of shock and denial.  Unfortunately, due to the lack of knowledge about RSD, the denial stage can remain a lifetime.  Even if we try to educate those close to us, some may never fully understand and remain in denial of the condition.  It is important to understand the denial stage even if the loved one does not. This stage can represent disbelief in the condition. It is more important for YOU the RSD sufferer to view the person as in denial VS being against you and in disbelief of your symptoms.

2. Pain & Guilt These are two emotions we may feel as an RSd sufferer, again it is important to understand that those close to us could be feeling the same emotions. There might be some guilt involved because a loved does not know how to help us or make us feel better.

3. Anger & Bargaining A loved one will also feel angry about a diagnosis, this due to frustration in not fully understanding how much the condition may be affecting our lives. A loved one may question fate and ask “why me” in other words why me being stuck with this person with chronic pain. The frustrations may give way to bargaining tactics to bring back the old you, like; “If you just could walk with me like you use to I’d quit ______”  This is related to denial of your condition and many people  may swing in and out of the denial stage.

4. “Depression” Reflection and Loneliness: The RSD sufferer is not the only one to feel these emotions, a loved one can have difficulty accepting our new lifestyle. The depression can be as cutting as having the condition itself. The reflection and loneliness give the path to acceptance. It is important to communicate openly with those close to you. Understand that loved ones being supportive can also feel isolated and helpless.

5. Acceptance and Hope The RSd sufferer is best when accepting the RSD diagnosis. We have to be comfortable in our new shells first. With patience and understanding the loved ones in our lives will follow suit and be there for us to offer hope. It is important though as the RSD sufferer not to have life interrupted so much so that everything is about your RSD.

Thats it, I call this my 5 Stages of RSD Awe. WE need to understand that those close to us also have emotions, and they have the right to express those emotions. I think if we better understand the process that all will go through it just might make sense for all to end up on a positive path. For many, the loved ones will stay in a constant state of denial. Total disbelief of the condition and how it affects us, Stop trying to “make them understand RSD” do start moving forward with your life and your RSD Awe process.

My Personal Struggle

Though try as I might to apply the 5 Stages of RSD Awe, I still struggle with a family member. This family member has Fibro and chronic fatigue syndrome, besides that  has some other health issues with thier liver and stomach. Recently this person sent me several very nasty e-mails over my choice to obtain pain management and subsequently narcotics to deal with pain. I was called a self loathing drug addict to shorten the very lengthy acerbic toned e-mails. I responded calmly to each e-mail, if there is one thing I know it is that this family member loves me and feels thier strong tone will sway my choices. Still though the messages to me, very toxic and not welcome.

This family member is caught between anger and denial. This person understands chronic pain but is also angry and bargaining.Statements are made;  “If i can deal with my pain, you can deal with yours” – this is bargaining, I understand this. It is how I deal with this person, and the emotions theystrongly expresses. Dealing with this family  this way empowers myself to be strong and make my choices based on the information I have, I strongly emphasize I. If you have a loved one try applying the 5 Stages of RSD Awe to better cope with those you feel are against you. As humans we are want to be helpful to each other, no one is outwardly against you – they are just going through and or stuck in these stages. This may empower you to move forward with your life in a positive way.

 

Pain Abyss

I think anyone with any chronic pain condition can relate to the abyss one steps into when dealing with “Pain Management.”  I know I’ve had my kicks in the rear dealing with doctors. I’ve written about over-medicating in another post, my feelings about how I feel far too many are thrust onto heavy narcotics by doctors, but here lets look at my story which I feel not all that uncommon. I feel that many pain management doctors are wolves in sheep clothing. Again, these are doctors that are suppose to help us, not hurt us.

Pain Management

As defined is a branch of medicine employing an interdisciplinary approach for easing the suffering and improving the quality of life of those living with pain. First let’s define interdisciplinary shall we?  Interdisciplinary: combining or involving two or more academic disciplines or fields of study. Lets meet the interdisciplinary team shall we?  This group of treatment may include medical practitioners, clinical psychologists, physiotherapists, occupational therapists, and nurse practitioners as well as anesthesiologists and  neurologists. So all these backgrounds are combined in pain management treatment, usually by one almighty degree holding pontificating pompous monster – the pain management doctor. Do I sound a bit harsh? Of course I do, my last meeting with a pain management doctor did not go well at all, and I’ve heard the story many times from others. There needs to be a change in how these specialty doctors treat chronic pain sufferers. We are all not drug seeking malingering crack whores.  Most of us just want some relief from the hell of suffering 24/7.

Pain managements goal is suppose to be to treat pain to a more tolerable level. I always love this saying, it’s like asking if you’d feel better sticking needles in your eyes or drinking battery acid. A tolerable level? What is this? Pain is pain. A tolerable levels mixes mindsets of the Mcgill pain scale (which is crap). The Mcgill pain scale rates pain by descritpive words to describe the pain. I discussed this briefly during a radio interview recently. I can get a paper cut and describe the pain pretty damn creativley, but is that pain the same as pain with RSD? Hell no. I know that the paper cut will heal. The RSD will not.  I can describe the paper cut current pain in 20 words, it stings, burns, shoots, tingles, radiates, throbs, …and so on – you get the point. So with the creative words you generate a pain level, zero – ten, 10 being the worst. Thats how the McGill pain skill is suppose to work. It’s a flawed system in my humble opinion. At any time I can conger up at least 20 words to describe my pain, even while on pain medication – the meds though “muffle” the pain, in other words the pain not as intense. This though is how doctors decide to treat, by asking what your pain level is at.  Right now I can say I am at a solid 6-7. Pain managements goal is to get people down to a 2-4 as nothing will take RSD down to a zero- unless of course you want to be comatose on some narcotic.

As I stated my level is a 6-7 right now. I can tolerate this during the day. I keep busy and focus my mind elsewhere then the pain. Some days without medications I can get this level down to a 4.  I take pain medications as needed. So why the hell do all these pain Management doctors want to stick me on time release 24/7 narcotics? Seriuolsy I’ve seen five different PM’s, ALL wanting me on a 24/7 narcotic.  What the frick?   Whats even more baffeling is being deemed as addictive personality and being put on 24/7 time release meds. I do  not get it.

Addictive Personality

The lovely sheet of questions we all get at PM visits, I was honest on mine. My mother died of an accidental overdose, the med combination got her. My mother was also an alcoholic, sober for the past 15 years before her untimely death. I too use to drink a lot, now if I drink a six pack a year that is too much.  But still I was deemed an addictive personality. Whut?  Prior to the start of my cancer chemo treatments I was pain med free for over two years, I’ve had RSD for 3.5 years. Early on my first PM prescribed Morphine, I did not like this so went to another who advised time release Morphine – HUH? The third and fourth PM wanted me on Methadone. Double huh. During these doctors I had a advanced bladder infection and was given vicoden, this medication worked nicely for the pain I’d get at night that caused me to loose sleep. I was refused this medication  from PM’s because I was told that vicoden is not a sleep aid. Uhm Hello – I know it is not a sleep aid like ambien but it takes the pain down so I can sleep. Alas, I am the idiot for asking and only offered heavy time release narcotics narcotics for pain.

The last PM, Gupta Rahli Sanjay ( not his real name) in a thick Indian accent was abrasive to me. “Come on now you must be telling me the truths now” was his favorite line as I told how I took my current pain medication, 4 MG of Hydromorphone. “Some day I may take 3-4 doses and others I only need one dose” was always my response. I must be lieing according to Sanjay as he kept drilling me about the doses. I became frustrated and startred to cry. I was in pain, hadn’t slept and had not had any pain medication for over 48 hrs, I was a hurting unit, my coping skills were shot. I sat there and blibbered like a baby. Now also getting really pissed at my husband who I had brouight in for support and is just sitting there. I’m like say something you dolt, say you watch what I take and we discuss my medications…say something…anything, Dead silence. I was handed a tissue. I’m now being told becuase of my mothers history I am an addictive personality. WHAT THE FRICK?  My mother had an accidental OD. ACCIDENTAL was on toxicology report. She was prescribed two medications that should not have been taken together. So now becuase of medical malpractice I am being labeled “addictive?” Shut the screen door!

Time Release Pain Medication

So now I’m sitting there, wimpering still. Sanjay is trying to figure out dosages and drilling me again on how much I take. I tell him in a week I’d average 2-3 doses a day. Thats not good enough.  He does this math using the number the 4 (thats the most I would take in a day. I’m now getting a script for a time release pill called Exlago or something like that. Sanjay is explaining that this is a very heavy narcotic and I’m so young to be on this. I’ve managed to gather myself and remark that I’d prefer my current method of treating my pain, I wish not to be stoned all day. OH Red Flag – I said the word STONED. For christs sakes now Im getting drilled about that. “Do you like being the stoned feeling”  OMG! Puhlease shut up! I am thinking to myself.  I explain myself and the new med script is written.

Long story short, as I’ve written about this already, the new medication cost too much. The new PM decides to put me on a fent patch. I spent an entire day throwing up while on it and removed it.  The PM refused to give me anything else until I saw him. I could not get in for over a week and was advised to take Tylenol. HA HA. No kidding, take tylenol for RSD pain. I told the nurse to tell Sanjay to go F himself.  I called my oncologist who had been writing scripts for the hydromorphone and explained the situation. Presto – a pain med script. Whats funny, is even the pharmacist (after I told him the story) could not beleive the switch. “Why if controlling as needed would they put you on something 24/7?”  The question may never be answered.  What is final? I will never see Sanjay again.

Suffer, Suffer, Suffer.

Why is it that those of us with chronic pain must suffer so much? I’ve read many stories about PM’s who treat RSD patients like I was treated. Take Tylenol for pain? Serioulsy, after you just prescribed a heavy narcotic you are telling me to take Tylenol. If frickin Tylenol helped with pain I would not be here you daft ignorant pompous jack-hole.  This is what I have achieved for being honest with doctors. No more shall I mention my mother, no more shall I mention that back in my twenties I partied and drank a lot. I shall lie, err well not mention those details. I am not addicted to anything. I am proud when I need not take any pain medications until the evening. I accept the bad days when needing something to control the pain by noon. There are good days and bad days, I accept this. Why are PM’s not accepting and feel the need to drug us 24/7?  I just do not understand.

I’m left with 60 pain pills. I now have to get a referral to another PM. Another rollercoaster ride. Yesterday I only took one dose…Today- who knows, It’s onlyu 9:30 in the morning and my gremlins are taunting me already. Perhaps because I am upset and writing about the incident again. Must go calm self – happy thoughts.

Positive Thoughts

Living it up, It’s a big kick and it’s good for you! Those are the lyrics of this song, full lyrics here . I used this song to open my interview (click the radio box “Kathy Buck VS) with coach Marla on her blog talk radio show. This was something  positive that happened in my life recently and it needs to be acknowledged.  Am I being a bit  narcissistic by posting this link? Of course I am, as I stated in the interview I can be narcissistic, but in a good way.  Did you view the lyrics? “Your whole world could change if only you just broke through. The fears inside your head are doing nothing for you. “  What does this all mean?  For myself and possibly others it’s the voices of others telling us to do something else.

Prior to this interview I had quite the encounter with someone close to me.  I’m tired of being told how I should act and how I should be. ‘Should” is a bad word in my opinion.  The word “should” denotes an expectation, in reality we have no real control of outcomes.  I’m tired of being told I fixate too much on my conditions and that writing about it is only making me worse. These are assumptions.  All of these assumptions being cast upon me. What “Should” I do? I will stop letting this persons expectations control my paths of choice.  This persons expectations are not the same as mine.  IN short – I was called a drug addict for taking pain medications. Bit harsh.

I had a great time being interviewed by Marla and her co-hosts Chris and Meg. The show format is very free flowing and much like a coffee clutch of folks sitting down and just speaking.  I was happy there was no official format of questions, that would have been boring.  Marla referred to me as an inspriration, I do not if that is true. My blog is just a reading of my journey with breast cancer and RSD. Sure some people have contacted me and thanked me for my open posts, I am grateful for thier words and stories. It’s amazing how the internet can connect people.

As I stated in the interview, there is little to no information available for treatment of people with RSD and having cancer. Choices are difficult.  This is a testimony to how much research needs to be done on RSD. Meg, one of the co-hosts on Marla’s show mentioned that the doctors reference book only has two paragraphs about RSD, why is this?

MY mission is to get more awareness to RSD. More awareness to cancer pateints with RSD. In the meantime – positive thoughts and movement.

And on a happy note, two days in row Ive only taken 1 dose of pain medication. I’m still hurting but coming to terms with the pain and finding ways to ignore it.  I’ll be back soon with a more informative post – life is happening.

Announcement

I will be live on “Winning Life Through Pain” Radio blog talk show on Sept 28th at 1PM CST. You can listen live here : http://www.blogtalkradio.com/winninglifethroughpain

I’m very excited to be on this show format! I’ll be talking up close and personal about my journey and taking any questions / comments. Hope you can make it!