Penny Update!

It has been a while since I have written an update about Penny and I think it is due time!

Penny and I have been doing great! To say she has changed my life is a complete understatement and I have no doubt she will continue to have a huge impact on me. I have a few little stories to share about our recent adventures.

Yesterday was a busy day for me. It didn’t start out as such but I ended up having to tend to some urgent medical things (I will write about them later, because that is quite the story as well!). The day started with a trip to the lab for some routine blood work. Since I take Imuran, an immunosuppressant, I need regular monitoring to make sure my liver is okay and that I am still producing white blood cells. This was my first time having blood work with Penny. There was a bit of a wait but not too bad, about 30 minutes, and then we were called back. We get into the little cubical and Penny is sitting on my right side watching what is going on. I rolled up my sleeve and presented my arm. The tech prepped the area and got it all ready and when she had the needle ready I looked away.

As I looked away and the tech put the needle into the vein Penny picked up her paw and rested it on my hand. As the blood draw continued she left her paw there and then rested her head in my lap. The tech and my friend were losing it because of the impossible cuteness of Penny’s unsolicited attempts at comforting me. She continued to hold my hand until I left the lab.

Penny has been working so well lately too and alerting to EVERYTHING. She will work to sounds in any environment and she will abandon anything she is doing to alert me, including her dinner, her favorite duck toy, and lounging on my bed. She just loves to work and do her job! I am so proud of her and how great she is doing with everything. She tries so hard and all she wants is love and cuddles in return. She loves to be told she is a ‘good girl’ and she loves to please me in anyway she can. She didn’t used to be a super cuddly dog, she liked her pets and attention but she needed her space and she didn’t much like hugs and laying with me but now she will and she looks at me with her big brown eyes in a way that just says “LOVE!”. I wouldn’t trade her for anything and she is the best dog and partner I could have asked for.

Pain, Stigma, and Internalization

Pain is a universal experience. Everyone will experience pain at some point in their lives, whether it be a stubbed toe, a needle poke from a vaccination, a scraped knee, or strained back. Despite pain effecting everyone at some point in their lives, the experience of it is completely subjective. Everyone experiences it in a way and to different degrees. It is greatly misunderstood and the experience of pain, especially when it isn’t linked to a blantantly obvious wound or visible mark is often stigmatized and judged. For those of us with chronic, largely invisible, illness that happen to have a pain component this can be one of the hardest parts to deal with.

I have chronic pain and it isn’t an experience I can easily hide. I have experience moderate pain in my legs my entire life. I have dealt with spasticity, which is when your brain tells your muscles to contract and engage even when they don’t need to and this plays a role in causing secondary painful conditions. The constant muscles contractions have put a lot of strain on my joints and I started having knee and hip pain before I was even in my teens. Now I have tendon problems and chronic bursitis in a few joints. The spasticity in and of itself is also painful. In the last few years it has begun to catch up to me even more and part of me wonders what role Behcet’s Disease is playing in this as well.

I have also written before about the lumps/tumors that have grown in my lower back in the last several months. Getting them evaluated has been difficult but we seem to be moving forward with that. Last week an MRI requisition was sent in to have imaging done and hopefuly be able to see what they are. We have ultrasounded them but they weren’t visible despite being easily palpable by even non-professionals. They were recently looked at by a physio, mostly to try to assess the pain in the area and it was determined that they are irritating the bone in the area and that I have a bunch of trigger points around it. All I know is that sitting is painful and I use a wheelchair. It kind of sucks and I would love for them to be treated or removed, but first we need to figure out what we are dealing with!

The point is that I experience a lot of pain. Somedays my pain levels are such so that even people who barely know me can tell I am uncomfortable based on my face, my squirming, and inability to focus. Somedays I am better at keeping it on the inside but I am still experiencing it. It is hard to explain to someone who doesn’t have chronic pain what it is like to constantly hurt. It is hard to make them understand how it impacts my ability to focus and get things done. It is hard for them to understand the psychological impact of constantly hurting. I am not sure I even what them to undestand though – what I really want is for them to respect my experience.

Pain is so deeply stigmatized in Western culture. If you have chronic pain you are seen as weak, as just looking for drugs, as an addict, as someone who just can’t cope well. Expressing that you are in pain, even to a doctor, can be incredibly hard. Pulling out a pill bottel several times a day to take a narcotic pain medication, explaining what the medication is for, it isn’t easy. What I do not understand is why this is the case when pain is a universal experience. Everyone will experience pain that brings them to tears at some point in their life. Everyone will take tylenol or advil for pain at some point in their life. Why is my experience so difficult to digest for the average person? I wish I had that answer and I wish I knew how to challenge it better.

The reality is that I internalize it rather than challenging it. I take on the discomfort of others as my own. I waited a long time to complain about pain to my doctor. I spent months convincing myself to ask to increase my medication dose because of tolerance. By the time I was talking about it I was desperate and it took several weeks to get started on a new path. I have been suffering as a result of internalized ablism and accepting societal pressure to just “suck it up” and “deal with it” but in trying to do that, I lost the ability to function and thrive. I was robbed of a lot of experiences as a result.

I started on a new medication last week. It wasn’t one that I ever wanted to be on. When I started talking to my doctor about pain I was pretty clear that non-narcotic pain management is what I was after but that isn’t what was offered and I have been desperate. The new medication is working. It isn’t perfect and we need to mess around with dosing, but the last few days have been significantly better. I know I deserve that and it is okay for me to hurt less and be more functional. Part of me is holding out for it to be fixed though. I want the pain to be cured, not masked. That is what I have really been begging for from my doctor but I know it isn’t possible. I know she can’t cure it, and I know no one can. Accepting this pain managment and this pain medication is accepting that the pain itself can’t be cured and it will never go away.

Disability and Fashion

I posted on Facebook, and here, that I was looking for blog suggestions. The first one I got was “Fashion and Access to Fashion” and I think this is actually a very cool topic!

For those of you who read this and know me personally, you know that I am very girly. I love pink and purple, which is perhaps also suggested by the color of my blog. I never used to care what I wore, especially not through high school. Most of my clothes came from Reitmens or Suzy Sheer as a teen. I was more likely to be dressed the same as a teacher than I was to be dressed like a student. I found denim to be completely uncomfortable and I only wore dress pants as a result. My hair hair was short but nothing about it was particularly stylish, but it wasn’t horrible either. When I hit second year university something happened and I started to care – though I am not sure what sparked the shift. By 3rd year I was actively trying to dress well and I discovered Anthropologie, which is now definitely my favorite store.

Fashion is complicated by disability for sure and I think that was always one of my barriers to dressing “fashionably”. I find a lot of fabrics to be uncomfortable. I cannot tolerate anything that may be itchy and like I said, denim kind of sucks. My sensory issues have always, and still do, play a big role in how I dress. There was one year, when I was about 12, where I only wore fleece because it was the only thing I found to be comfortable. These days I have learned that there are lots of very comfortable cottons and natural fabrics that are soft, breathable, and that move well with the body. I avoid things like itchy wool in sweaters and even acrylic, going for natural fibers like alpaca, cotton, bamboo, etc. I highly recommend this for anyone with sensory processing issues or wheelchair users. Breathable fabrics enhance comfort significantly when you are seated all day!

Perhaps one of the biggest learning curves for me when it comes to dressing was when I started to use a wheelchair in my day to day life to get around. This may not seem like it would have a big impact on ones clothing choices but unless you use a chair, you have no idea just how big of an impact it has. For starters, I find pants very uncomfortable. The seams on the inside of the legs have given me welts before from the pressure of sitting on them all day. Now if I buy pants I get them a few sizes too big and I look ridiculous in them if I stand up, but I am comfortable when I am seated. That way they can’t dig into my tummy, the seams are not shoved into my skin, and I don’t feel like my pants are slowly suffocating my lady-bits. For me, the best way to really deal with this is to just not wear pants. I am not suggesting that wheelchair users who have similar issues just run around naked – though I must admit I am currently pantless in bed as I type this. I really hate pants…Instead of pants in the day to day I wear leggings with a skirt over top. I live in Canada and it is cold here in the winter. During the summer I go bare legged with a skirt, but for days like today at -20 degrees the leggings are nice added layer! Leggings are the perfect clothing item as far as I am concerned. I have at least 15 pairs and most are simple black. They are my staple clothing item and I wear them every day. They are soft, cotton, breathable, and flexible. They are thick enough to keep me warm and thin enough that my bum doesn’t sweat sitting in them all day.

Over the leggings goes a skirt. I have several denim skirts that are sort of like my go-to. Similar to how most girls wear jeans everyday. I also have some corduroy skirts, and others in varying levels of fancy. For me this is about making what is “in” comfortable. I go with fabrics that most people are wearing in pant form and get that in a skirt. Most of my skirts are around knee length, but some are shorter or longer. I like something that covers my legs a bit and keeps me warm. I especially love skirts that I can drape over my legs, so anything that flares out a bit. I find that to be very flattering in the chair. I also look for dresses with that sort of A-line cut too. On my top half I am normally in a sweater or a comfortable tshirt with a sweater over top. I try to get looser tops or ones that flare out a bit over the stomach. This covers up any tummy rolls you get from sitting and smoothes out my sillouette. It is also more comfortable since it drapes nicely and they don’t ride up when I lean forward and back to propel the manual chair. Lucky for me this style was “in” this past summer and I have a good collection of tshirts that are cut this way.

The best part of using a chair for me is the shoes. Growing up I despised shoes. Shoes don’t fit me well. They hurt my feet. What is comfortable is generally hideous. In the chair shoes are merely a decoration for me feet. I get away with $10 flats from Ardene all summer and during the winter I can wear cute boots with heals. I can wear stilettos without missing a beat and I never need to worry about my shoes getting scuffed or damaged. I had my footplate on my chair angled downward to accommodate for the heels too and this way my calves stay stretched and my feet don’t get sore. It is kind of ideal!

Now that you know how I dress, let’s talk about access to fashion. The plain fact is that clothes aren’t designed for any body. There is a basic shape and way of moving in mind and anything outside of that doesn’t work so well. Wheelchairs, scoliosis, the need for bracing, etc – it all impacts what we can wear. I am lucky that my personal style works with what exists but I do often wonder if that is where my personal style comes from it is purely based on comfort and accessibility. Would I wear pants more often if they were comfortable? What if they didn’t look silly as a seated person when they ride up at the ankles and expose my socks? Would I wear form fitting tops more often if I didn’t have to worry about them being pushed up as I propel? I am not sure.

I know there are some parents of kids with disabilities who read this blog and I hope some of what I described above can be helpful to you when getting clothes for your child. A lot of parents don’t dress us in particularly nice clothing and I know that is related to all of the barriers I mentioned above – comfort, fit, practicality, etc.  There are ways to make it look fashionable though and to give your kids comfortable clothes that are easy to put on and take off. Kids are mean to each other and looking good/fitting in it with the crowd can help a lot. I know for me, when I feel pretty and when I started dressing more my age, I noticed shifts in how people interacted with me.

I also have a firm belief that assistive devices should look good. This was something that evolved for me over time. I used to have plain white plastic Ankle-Foot Orthotics, my hearing aids were beige, my crutches were plain metal, etc. The shift started with my hearing aids. I needed to replace them and I decided to go with purple. From there I got colored ear molds. Now I have clear earmolds again due to allergies and irritation but I have purple hearing aids with hot pink tubing and I attach different charms to the tubing that hang down and make it seem like I have an extra earring. Sometimes I put rhinestones on the hearing aids to make them stand out a bit. When I started to do this I noticed people commenting on them. It wasn’t “how deaf are you?” Or “what can you hear?” It was “Wow! That is so cool!” Other hearing aid users ask about the charms and the tubing. Suddenly it wasn’t about what I didn’t have, it was about how cool and pretty the aids were.

From there came the next AFO. It was purple. I just had a new set made and they are baby pink, which isn’t that awesome and I was hoping it would be brighter but I have plans to decorate them and make them more “me”. I also recently covered my wheelchair in purple duct tape and painted my caster forks pink with nail polish. This is another thing I am going to encourage for parents of disabled kids – LET THEM DECORATE! Use things that can be changed, like duct tape or electric tape. Find stickers, add rhinestones, do whatever you can to let your kids own their stuff.

The last thing I want to mention is hair. I have a pixie cut, and part of that is linked to disability. I had a chin length bob til this summer when I got sick with my first big GI Behcet’s flare. Shortly after I was discharged after a weeks stay in hospital I cut it off. Being sick, especially with a chronic illness like BD, means that fatigue is a big part of life. While I didn’t mind getting up every morning early enough to have 45 minutes to section out, blow dry, and straighten my hair I just didn’t have the energy today it. I wanted to be able to spend a minute drying it, throw in a bit of product, and go. I knew I could rock the pixie cut and so I said good by the the bob that I had worked so hard to grow out for two years and resumed life with short hair. I am at a point now where I want to start to grow it out again. I probably will start that process with the next hair cut and my hope is that by the time it is long enough to need that  hour of styling everyday I will be in a remission and able keep up with it.

Looking good and feeling pretty can have a big impact on health in and of themselves. If I feel hot, and if I feel like I am beautiful I am happier and more confident. Learning how to own my disabilities and embrace them has been a big things for me and now that I have figured out how to incorporate my own personal style into how I dress and how I present my assistive devices to the world I am a happier person. My chair is a part of me and accepting that, embracing it, and making it look like it is a part of me helps a lot. I encourage others to do the same when you can. If it is there anyway you might as well make it look good – just like glasses!

Post comments or questions if you have any! Continue to throw blog suggestions my way!

Behcet’s is Kicking my Butt! AND A Story About Needles

Okay, okay, I admit that I have been a bad blogger. To be honest, Behcet’s Disease is kicking my butt these days and it is making it really hard for me to do much. I am not sure how much is the disease itself and how much is the meds. I wrote in my last post that I was started back on Prednisone and Imuran. I have survived my 2 weeks at 15mg of Prednisone and tomorrow I reduce my dose to a more tolerable 10mg. The 15mg was much better than the 40mg from this summer and I was able to maintain a certain degree of calm control of my life. I have been a bit emotional and a bit of a loose canon but whether that is Prednisone side effects or just life is hard to tell to be honest. I am looking forward to weaning down and being on this drug for as little time as is possible!

Imuran on the other hand is a monstor. I was started right on 100mg a day, which isn’t that high of a dose, but it hit me hard with intesnse fatigue and nausea. Combine that with the ravenous hunger induced by prednisone and I wasn’t a happy person. I stuck it out for the first week and then I asked my pharmacist about it and she suggested I cut back on the dose and wean myself back up. I emailed my rheumatologist to enquire about this and he agreed so for the last week I have been on 50mg a day and that is it. Tomorrow is the day I go up to 75mg but part of me wants to wait until Monday. I am taking an intensive course at school right now which means one week of long ass days for one credit. I am not sure I want to deal with potential side effects for the rest of the course knowing I am coping okay on 50mg now.

We are also finally trying something new for pain. We are trying an extened release mediation and seeing how it works. I have just hit the 24 hour mark of being on it and I did still use breakthrough medication today but over-all it was one of the best days for pain management I have had in ages. My hope is that this will continue and that soon we will find a dose that works well and I won’t need the breakthrough as often. For now I am to keep a journal of when I take the extended release medication and when I take breakthroughs to see if we can find a pattern and adjust my dosing accordingly. I like that I have good health care that is really invested in pain management and ensuring I am comfortable because I am a much happier person when I am not in intense constant pain!

There are a lot of things I want to write about right now, but I am using this blog post as a way to wind down and hopefully sleep so I am going to try to keep it short. I just got a new tablet and so I am trying out the WordPress app on it right now to write this and it is pretty nifty. It am hoping that having this easy access to my blog will help me post regularly. Theoretically I can blog from waiting rooms and stuff!I think though that tonight I am going to write about needles as my closer.

Needles are a regular part of my life. I get B12 injections every two weeks and regular blood work. As a child and teenager I was the worst person in the world to go near with a needle.I literally did everything in my power to avoid them. Some injections give me vicious muslce spasms and that fear of those was definitely part of it but I just have this psychological thing with needles and they freak me out. In the last several years I had just decided to not be afraid. I did some CBTon myself and made a concious decision that they were not scary and I was fine and I needed to get over myself. This was working great until about a month and a half ago. What changed then? I have absolutely no idea.

Three B12 injections ago I found myself starting to panic. I was breathing heavily, I was anxious, and I was doing all I good to not push my doctors hand away. I think I muttered something about anxiety to her but she didn’t take much note of it. Two B12 injections ago I was clear that I wasn’t certain I could let her do it. She got it done, I didn’t push her hand away, I wimpered and breathed deeply for a while and I got through it. Last night I went back to the doctor, knowing it was once again time for the B12 injection, but this time I laid it all out there.

I explained that I am afraid of needles and I don’t know why. I don’t have any good reason for this to be resurfacing but the fear is there and it is valid. I asked her to simply talk me through it. I just wanted her to tell me what was happening as it was happening. Now I know that may seem silly. I have had a ton of injections and I do this every two weeks with the same doctor and we have a routine. I know her process exactly and I know what to expect. I could teach a medical student how to give a b12 shot in someones quad. I could probably give someone else a B12 shot in their quad. Iam very familiar with the procedure – that is my point.

My doctor opened by asking me if anyone has let me give myself a needle before and I said no, and that there was absolutely no way in the world that was ever going to happen. I have a big mental block with injecting myself with things. I could do it to someone else, but not myself. I also took this opportunity to inform her that if I end up on a self-injected biologic drug for my Behcet’s that she better know she is going to be the one giving it to me. Thankfully she agreed to that. She then got an empty needle and offered to let me hold it and touch it, to see if maybe some exposure therapy would help me out. I once again turned down this idea quickly. I touch syringes all the time and I have given injections to cats/dogs/horses on multple occasions. Holding it doesn’t bug me.

She decided she would just go for it. We got me all set up and she began. “Okay, I am going to swab it with alcohol. It is going to be a bit cold” and then she did it. Normally at that point I would start to get shaky and my heart would beat faster but it was feeling okay. I took a deep breath and watched. “I am going to pinch the skin on your quad now and there will be lots of preassure” and then she did it. I was still feeling okay with it. “Okay, now time for the poke. It’s just a little pinch!” And I watched as she stuck the needle into my leg and pushed the cc of B12 into me. All the while I was fairly calm.Out came the needle, she wiped off the injection site once more with an alcohol swab, we got my leggings back on and we were done.

The point of this story is that by communicating with me, even if it seemed like useless communication, she was able to calm me and make the injection be totally fine. I was focused on what was happening because she was forcing me to be engaged and present by narrating the process and the benefit of that was amazing. Doctors so often lost that ability to connect and communicate with their patients and the fact that calming me and getting me through something incredibly stressful was as simple as telling me what she was doing it amazing. Communication is an important tool and as professionals that is something we need to remember. We all to often make assumptions for one another, about what knowledge we each hold and what knowledge we each need and skip over those basics.

Part of me wanted to share that story because of how simple it was to calm me and get me through it, and to let other patients know that asking for that kind of narration can be incredibly helpful and it is well within our rights. I also want us to think about the role that the relationship and interaction between doctor and patient plays. This is something I think about a lot given all of my health care providers and the fact that i hope to work in health care as well. Those bonds that form and the way we communicate within those relationships are so crucial for accessing health care and for feeling safe in doing so.

I could go on more about communication and health care and perhaps I will dedicate a post to that one day soon. If there is anything that anyone out there wants me to write about please do let me know! I appreciate topic requests and I am happy to honour them!

Behcet’s Update

I haven’t posted in a while and it is largely because I am back at school now – which also means back to compulsory writing and me having much less free time! Penny and I are doing well. She is settling in to her new life as my dog guide quite nicely. We have a routine and we are both happy with how things are going, I think anyway! I feel, judging from the cuddles and love, I can make that claim for Penny too! She also LOVES her new food and there is never any left over in her bowl like there was at the beginning with the old food.

Health wise I am continuing on the road to control of my Behcet’s disease – at least I hope. The colchicine I was put on in December, which is the first line treatment because of how benign it is in terms of action and side-effects, failed for me. I had serious side effects and I compared it to being the flu in a pill. I lasted two weeks on it before I stopped taking it because I had side-effects and no symptom relief at all.

It has been a few months since then and I went back to see my rheumatologist yesterday, or well the one that specializes in vasculitis and Behcet’s disease. He had wanted me to see my GI again before seeing him, and I had done so, and she confirmed she didn’t think it was Crohn’s and she supported the Behcet’s theory. With this information we moved on to the next line of treatment for Behcet’s, which is also used to treat Crohn’s sometimes. I am back on prednisone, though at a much lower and more tolerable dose of 15mg for two weeks, then 10mg for 2 weeks, and then down to 5mg as a maintenance for a while. At the same time we started me on 100mg of Imuran a day and we may increase it to 150mg in 6 weeks at my follow-up.

I will be honest, I am not super keen on these medications. Prednisone is not something I tolerate very well but at this dose it will hopefully be okay. Imuran is also not my idea of an awesome medication, and I have had some side effects from it in the last 24 hours but hopefully those will pass with a few more doses. I am really hopeful it will control my symptoms though and I know I have to patient with the Imuran because it does take a few months to really work. I know last time I was on prednisone, all of my ulcers cleared in days. If I could have a similar response to it this round that would be amazing. The hope is that this will all bring my CRP down and the prednisone will kick my system into gear so that when the Imuran kicks in I can stop the prednisone.

My doctor said that in the event this doesn’t give me symptom control, of both the ulcers and the GI symptoms, then we will look into getting me onto an anti-TNF medication. I am really hoping I can get good control for now with the Imuran though because the anti-TNF drugs are really expensive and all are either injected or IV infused. Most people apparently self-inject them, except of course the IV ones, but I can’t do that. I am not really afraid of needles, I just have a lot of anxiety around IM and subq injections. IV’s and blood draws are totally fine. I could probably start my own IV or draw my own blood if given the opportunity, but I couldn’t give myself an injection. My plan, if it comes to that, is to make my family doctor do it for me. She already gives me my B12 every 2 weeks.

I have been feeling pretty crummy for the last few weeks. I got the flu and bronchitis and it hit me pretty hard and in the aftermath I am dealing with a lot of fatigue and additional pain. I haven’t been able to really bounce back. I am kind of hoping the prednisone helps that to happen! Another one of my concerns about the Imuran and prednisone is that they are immunosuppressants and I am now at a risk of more acute infections and having them hit my harder. My rheumatologist was clear that with even a slight sign of infection, cold, or anything else, I need to go straight to my family doctor and get checked out and proactively treated. It is just another thing to worry about.

I know I sound kind of like I am complaining right now and I feel a bit bad about that. It is just a bit upsetting because this is exactly where we started at the beginning of the summer – on Prednisone and Imuran. Then I was taken off of it and left to suffer with my symptoms for 6 months, and now we are back to it. A diagnosis helps and I am so thankful to be able to name it and say “I have Behcet’s Disease” and to be taken seriously now.

In other news we are now looking in to getting me a power wheelchair. I have injured my shoulders and I am trying hard to keep the pain under control but it is hard when I only use my arms to move because I can’t let the muscles and joints rest at all. It is also freaking impossible to move in the snow in a manual wheelchair and on manual crutches. My doctor and I agree that it is time for me to have access to all of the tools that I can have for mobility so no matter how I am feeling in a day I can get around. I am also really looking forward to be able to take Penny out for walks and not feel guilty for making her miss them on days when I can’t do it because of pain.

It was hard for me to accept the idea at first and people who know me know that I have been talking about it and thinking about it for a long time. At first I saw it as a knock to my independence and now I am able to see it more as an addition to my independence. I will be able to do so much more on days when I am having a lot of pain or fatigue. I will still have my manual chair and I can still use it when I can and that makes me feel a bit better. I am not limiting myself with this decision, just opening more doors. I also think it is hilarious that everyone asks me if the chair I am going to trial comes in pink. Sadly it does not – only blue, red, orange, silver and black. I think if I go with that chair I will get blue. Perhaps I can have it custom airbrushed with pink and purple butterflies or something!

Hopefully it won’t be so long before the next update!