The Blog

Port-A-Cath…

As most of you know I went to Peterborough Regional Hospital on Wednesday, May 31st to have a port-a-cath inserted into my chest.  I was to be there by 10:30am so that I could go to the outpatient lab department first and have my blood drawn and an ECG completed.  Once that was done I was sent down the hall to the day surgery department which is an extremely busy place!  I registered, filled out the required paperwork and then was told to sit and wait to be called.  My procedure was scheduled for 12:45pm so I sat down with my Mom and Dad and waited.  To my surprise I was called in by a Nurse about 10 minutes later.  We went into an exam room and we went over all of my medications, all my diagnoses and just the basic pre-op paperwork.  Then I was taken into another waiting room where all the patient’s waiting to go to the OR were sitting.  I was asked to change into a gown, put my belongings in a locker and then come back to the main area.  Thankfully I was given a stretcher but spending more than an hour on those things causes me SO much pain and discomfort.  The Nurse then prepped my chest and neck on the right side and told me to wait and a porter would come get me to take me to the OR at my scheduled time.

A couple of things here, due to the anaesthetic given in the OR, I was not allowed to drink anything after midnight the night before, I was also told to cut my pain medication dose in half.  Now this most likely would have been fine if I had gone to the OR for my regularly scheduled time.  Unfortunately, an emergency patient came in that my vascular surgeon had to operate on ASAP so they had to bump a bunch of us back, for the record I completely understand the need for this.  In the early afternoon, I finally asked if I could have my regularly scheduled medications as I was becoming increasingly uncomfortable with each passing hour.  Also, I would like to give a big shout out to my Mom who sat with me for HOURS in a crappy chair even though she is dealing with her own hip/leg issue.  So, finally at about 2:00pm I was informed that I was next so I told my Mom to go get lunch, a coffee, etc. and the Nurses said they would call her once I moved into recovery phase two.  The area that I was waiting in was emptied out entirely and the Nurse came to me and said that they close that specific waiting room at 3:00pm.  She was thinking the porter would be there to get me before she finished her shift so she kept me in the room with her.  She was super nice and even moved my stretcher over to the middle of the room and let me watch some of the Jays game while she finished her paperwork.  Shortly after 3:00pm she said she was really sorry but they obviously weren’t coming to get me so I would have to be moved to a different area, she wheeled me down to the phase two recovery room and parked me in a bay.  By this time I knew my Mom would be coming back soon and the Nurses said it was still going to be awhile until I was going down to the OR.  I approached the unit clerk and asked if I could please call my Mom.  She wasn’t going to let me and said I would need permission from my Nurse.  I politely explained that I didn’t have a Nurse and that I was still waiting for my procedure.  Finally she agreed and I called Mom and told her not to bother coming back for a bit.  By this time my Dad was back (he went to see my grandparents) so they hung out together waiting.

By 4:00pm I was a mess, I was going on almost 7 hours with no fluids and I was not properly medicated!  Due to my illnesses, this is not a good thing and I was starting to become really sick.  I used my call bell and a Nurse came down to speak with me.  Her first words were “you don’t look very good” and then she quickly said she would start an IV, give me IV fluids and IV Gravol.  I was so incredibly thankful for that Nurse and all of her kindness.  After we got a line started, fluids and medications running, the porter came to take me to the OR! The Nurse and I were both shocked as she was told that there were still multiple people ahead of me.  I found out afterwards, that due to the emergency surgery that had occurred, my surgeon actually cancelled multiple people and told them to reschedule.  I’m not sure how I got lucky enough to make the cut (no pun intended) but I sure was relieved!

Once downstairs where the OR bays are, I met with my OR Nurse who went over some last minute details, then my vascular surgeon came by and we discussed the procedure and signed the consent form, and the anaesthesiologist also spoke with me and helped calm a lot of my fears.  One thing I was also very grateful for was my surgeon listening to me, the Nurses prepped my right side because they said it was written in the doctor’s orders so I asked the surgeon if it was at all possible to put it on the left since that is my non-dominant side.  She looked at me funny and then told me that she always does it that way (unless there is a certain reason why she can’t) and that there were no orders saying to do the right side specifically so she went ahead and prepped my left side right then and there.  So I was just relieved since I use my right side for everything!  Once I was wheeled into the OR, I met the other scrub nurses that would be assisting in my procedure, I was put on the OR table and strapped down. For this particular procedure, the type of anaesthetic they use is called a local neuro, the OR team described it as being in a very, very deep sleep but you are still able to breathe and such on your own so no breathing tube is required.  Due to my Ehlers Danlos Syndrome (EDS) anaesthetics do not work well so a lot has to be used and it wears off really fast.  My anaesthesiologist assured me that he would monitor everything and NOT let me wake up (I’ve had this happen before and I will never forget the experience).  So, once I was strapped down they administered the first medication and the ceiling started to move (A LOT) but I was still wide awake and totally aware.  The anaesthesiologist leaned over me and asked how I was doing and I replied “well the ceiling is moving but otherwise I feel ok!”  He looked a little surprised told me to hold on a second, injected something else and the next time I woke up, I was in the recovery room, so definitely a big shout out to him also because I certainly did not wake up and I remember nothing!

Once in recovery I was in bad shape, I was crying from the pain being so bad (the local was barely masking the pain) and my surgeon did not order enough post-op pain medications.  In her defence, she does not know me so it is not entirely unexpected.  Once the Nurses in this recovery area were satisfied with my vital signs and my pain was somewhat managed, they wheeled me over to recovery phase two.  Now this I want to mention because I think that it’s a great idea, having phase one and phase two recovery rooms is the best!  I’ve had multiple surgeries and procedures where I’m in recovery still trying to fully wake up, the surgeon comes in and tells you a bunch of things and then you leave and basically think “huh?”  With having the recovery phase two room, the patients are much more awake and their pain is better managed, plus family is allowed in there so that any information or at home instructions can be explained then!  Anyways, they finally called my Mom around 7:00pm to come get me and take me home.  I was given some CCAC information and post-op instructions and was finally allowed to go.

I got home around 8:15pm on Wednesday night and was so, so grateful to be home.  My parents got me settled and then started their trek home.  Since the Nurse had prepped my right side and the doctor had prepped my left side, I was basically pink every up to my chin, very sore, and very itchy.  Thankfully Ryan was able to use warm water and soap to gently wash some of it off for me.  That stuff does not come off easily!  Then I took my own scheduled medications and was finally able to relax around 9:00pm.

Thursday was post-op day one and the hardest part of that day was definitely waking up in the morning.  I could barely move, it felt like I was being stabbed in the chest.  Thankfully, once I got up and was able to take my medications it really, really helped.  Ryan also brought me an ice pack to help with swelling, etc., ice packs are seriously a life saver for this surgery and also frozen peas/corn (thanks Sarah!).  You don’t want anything too hard or too heavy because it will just cause more pain, obviously.  After getting myself a little more settled, I got in touch with my CCAC case manager to let her know I had the port, was at home, and needed a dressing change.  She told me that a Nurse would be assigned to me and they would be coming to visit me that same day.  Late in the morning I received a call from Michael, my home care Nurse!  He came shortly after lunch time and he was amazing.  He is extremely knowledgeable, friendly and easy to chat with.  He did all the intake paperwork with me and then we removed my bandages, checked/cleaned the site and put new ones on.  He will be back next week to remove my sutures, teach me how to access my port, hook up fluids, etc.  My family doctor got the CCAC referral for IV fluids sent in on Friday so we’ve definitely got the ball rolling!  Unfortunately, Thursday was also chemo day so I gave myself that injection in the morning.  I didn’t have too many symptoms but I was definitely more chemo sick Friday and with it being the second day post-op my pain, bruising, etc. had ramped up as well.  It’s all good though, I’ve got this!

On Saturday around lunchtime, a delivery person from the home health company delivered my port supplies.  There are multiple trays with the sterile tools for accessing my port and hooking up the IV fluids.  I will have a small pump that I carry in a bag with the bag of saline and it will infuse the fluids through my port.  The plan is that home care will be doing a few in-home teaching sessions in regards to how to care for my port, as well as, how to access/de-access it and then I will be independent with the ability to call CCAC for questions/concerns.  CCAC will also be providing all of the necessary equipment and supplies that I will require in order to safely use my port.

So, the main thing right now is lots of rest and icing the site until we get my sutures out next week.  It is a strange feeling still and when I move in certain ways I can feel the port and the catheter which is really weird!  Then we’ll get my IV hydration organized, get my coverage for the Inflectra in place and get me on an infusion schedule.  The goal is to see what exactly we can do to improve my quality of life.  I was extremely nervous about getting a port but so many amazing people offered advice and pretty much every person I spoke to said that getting a port was their best decision ever.  Not having to get an IV for every infusion and also not having to suffer and end up in the ER will also be a huge thing for me.  Being on chemo and biologics makes me very immunocompromised so it’s extremely important that I not expose myself to potential high germ areas.  Being able to do more for myself at home is so much safer for me and less stressful then ER visits.

Finally, to everyone that has called, text messaged, sent messages through social media, etc. to check in on me not only on the day of but also the last few days, thank you! It is so nice to know that there are people that care enough to check in and offer support to me.  Hopefully now after a year and a half there will be some easier days ahead.

Wishing You All Health & Happiness,

Lyndsay

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New Treatment Plan…

Happy Friday! So I figured now would be a good time to update everyone about what has happened over the last few days.  I wanted to wait until after my appointment with my specialist on Wednesday so that I would know what the plans were before sharing with all of you.

On Tuesday of this week I saw a new rheumatologist down in Kingston who was excellent.  I really liked him and his team of nurses who work with him in his office.  He went over everything that has been going on with me and looked at all of my medications, etc.  He was very thorough and he also agreed that I definitely have hypermobility and said that if I hadn’t already been seen by my specialist at Sunnybrook and been diagnosed he would have done it right then and there.  So then we talked about Humira, my psoriasis, my IBD and my possible psoriatic arthritis.  He said the psoriatic arthritis is most likely there but because of the hypermobility issues/EDS it could be either/or that is causing me immense pain, regardless, the psoriatic arthritis will be treated by the same medications so it’s fine.  With that being said, he has determined that Humira is not working and was quite certain that if it hasn’t started to work at all yet then it’s not going to.  I won’t lie, I don’t know if I was totally expecting him to say that but I had a feeling it may happen.  He told me that he felt very strongly about this and if I was his family member he would honestly still give me the same advice in regards to quitting Humira and getting on a combination treatment of two medications that they have had fairly good success with.  This was honestly more reassuring in a sense because I figure if he is confident enough that he would treat his own family the same way then I trust that he is right about me too.

So on Wednesday I met with my GI specialist who after reviewing everything decided to go ahead with the treatment proposed by the rheumatologist.  Now, here’s the part that kind of sent me spinning a little, the one new drug that I have to take is Methotrexate.  It is a chemotherapy drug that I have to inject into my muscle once a week.  Yesterday (Thursday) was my first injection so I will be taking this medication every Thursday and although it was harder to convince my brain that stabbing myself was ok, I managed to give myself a pep talk and all went well.  The reason this one was a little tougher than the Humira is due to the route of administration.  Humira is administered by the subcutaneous route so it’s a much smaller/shorter needle and it basically just injects below the skin into the fat tissue but for Methotrexate, the route of administration is intramuscular so the needle is bigger/longer and it has to reach down to the muscle.  It seemed to all work out ok, although I do have some muscle tenderness but that is totally normal.   I did experience some side effects yesterday, mostly headaches, nausea and fatigue but everyone I’ve spoken to have said that the second day is harder and they weren’t lying!  Today has been much worse with nausea, weakness, fatigue, pain, memory trouble, etc.  But never fear, I will fight through and continue on!  Now the way methotrexate works is by interfering with the growth of some cells in the body, usually ones that rapidly reproduce (examples would be skin cells, cancer cells, etc.).  For someone like me who has psoriasis this medication should help to slow down the rapid production of skin cells, therefore, hopefully reducing my psoriasis.  I still feel like it hasn’t quite sunk in completely that I am really taking a chemotherapy drug.  It all just happened so fast and we want to cause the least amount of delays in my treatment so there hasn’t been much time to really sit and process everything.  There are obviously things to watch for while on Methotrexate, it can deplete blood cells that help to fight infection so it’s important to protect myself and avoid coming in contact with germs/sick people.  Routine blood work is also important in order for my specialists to keep an eye on different levels so we can watch for any problems.  Also, since methotrexate interrupts cell growth, it can also interfere with healthy cells which can cause issues and complications (an example would be mouth ulcers) but one way to protect other cells from being effected by the medication is to take folic acid every single day, except on injection days.

The second medication is called Inflectra (basically a drug that is bio similar to Remicade) and it is given as an infusion by IV.  It will take a couple of weeks to get that all sorted out but the good thing is my GI specialist moved to the office space next door and he’s setting up his own infusion clinic right there.  This is good news because the alternative would have been driving 40 minutes away to Peterborough to an infusion centre.  Now Inflectra is a new drug that has just been approved by Health Canada and it is provided by Pfizer.  I’ve already been in touch with the patient care team that takes care of all the financial stuff, paperwork, etc.  My case specialist seems very nice and she will be following along and available to me for any questions or concerns that I may have.  This is very similar to the patient care program that was provided to me when I started Humira and it is seriously an amazing idea.  So anyways, I should know by next week or the week after when my first infusion will be.  I don’t know much about it yet other than the appointments take about 4 hours, the first hour is prepping me, pre-medicating me with hydrocortisone and then the infusion itself takes 2 hours.  After the infusion is done, I have to stay and be observed for about an hour but after a few times of going I can opt out of the observation if I want too. I was also told that there is a loading dose period so the schedule starts out with infusion one being week 0 and then I go back at week 2, week 6 and then every 8 weeks thereafter.

The last thing we discussed at my appointment on Wednesday was getting me a port.  My veins are basically no good from all of my illnesses and multiple IV’s over the last year and a bit so a port being placed will provide much easier access for the nurses and I believe most ports can stay in for around five years.  This is also being organized at the moment so hopefully by next week I’ll have an idea of when that procedure will be happening because then we’ll be able to get me on an infusion schedule as well.  The port is a small device that is inserted under the skin on your chest and then a catheter is threaded into a large vein in that area.  I’m hopeful that this will make things much easier for me and the nurses, as well as, provide me access to administer IV fluids when necessary to avoid having to go to the ER for treatment of dehydration due to flare ups and/or medication side effects.

Well that’s my update for today, as things start happening I’ll be sure to keep you guys informed.  If I’ve missed something here or mixed up my explanations in anyway I apologize, I’m burnt out! I’m definitely not feeling well today so more resting and medications are the plan.  Have a very safe and happy long weekend!

Wishing You All Health & Happiness,

Lyndsay

**Disclaimer: I am in no way affiliated with any companies and/or products mentioned in this blog post.  I’m speaking strictly from my own experience and all questions or health concerns you may have should be discussed with your own medical team**

What’s Up Wednesday…

“Every night her thoughts weighed heavily on her soul but every morning she would get up to fight another day, every night she survived.” – R.H. Sin

So last week I actually sat down and typed up a whole post and felt ok with it but I just never posted it to the site.  I don’t really know why but part of me believes that it wasn’t authentic enough.  Sure I gave an update of sorts and talked a little about upcoming appointments and some issues I’ve been dealing with but it just didn’t sound like how I feel.  I don’t know if that makes sense but part of the journey of writing this blog was about the good, the bad and the ugly and I feel like when it’s the bad and the ugly, I try to make it sound like less of an issue.  Now you might be thinking “well what’s wrong with that, after all, it’s so important to keep positive right?”  Yes and no, of course positivity is important to keep in mind when talking about illness, life, etc. but sometimes things just really suck and you know what, that’s ok!  It’s ok to sit back and say to yourself that maybe things aren’t really as positive as you were trying to portray OR maybe you need to feel the power of the bad and let it out, not keep it locked inside like a secret.  So then I reread my blog post and decided it wasn’t what I truly wanted to say and it certainly wasn’t what I was truly feeling.

To be completely honest, the last couple of weeks have been tough.  I have given up so much to chronic illness and it’s like this little asshole that just keeps taking and taking some more!  Some days I just want to scream NO, you can’t have that too!  Which obviously never works…obviously but this week is the anniversary of when I officially started my nursing career and bought my first car (which happened on the same day a year apart coincidentally).  Instead of taking time and reflecting on those achievements, I will actually probably forget to even acknowledge them because that little asshole stole my concentration and memory, as well as, my car, ability to live a normal life and forced me to put my dream career on hold.

So why am I feeling like this now, as opposed to weeks ago or whatever and to that I have no answer but all I know is right now I feel about as crappy as I look and it hasn’t been easy to snap out of it.  I’ve been dealing with a headache, a really, really bad headache that feels like it has been there 24/7 for weeks now.  I’ve gotten some breaks here and there thanks to some talented people in my life but it’s still there, especially with the changing weather, the cold, the rain, and all that.  Then over the last week and a bit, my GI issues have reared their ugly head again so I’m in pain and in bed the majority of the day.  This is nothing new but it certainly isn’t easy and then there are the other players: pain, dizziness, diaphoresis (sweating), chills and whatever else I wake up to each day.  I don’t know what exactly is going to help improve these things but I’m hoping that someone will have answers for me soon.  As most know, I ended up in the ER on Saturday morning.  Unfortunately, on Friday my GI issues became extremely severe and with all of my other conditions it doesn’t take long for me to go downhill and fast.  By 3:00am on Saturday morning I was almost at the point of calling an ambulance.  By 5:00am I had settled enough to get 45 minutes of sleep and then as soon as Ryan woke up I had him take me directly to the ER.  I was diagnosed with another IBD flare and dehydration.  I was given 2L of IV fluid, IV medications and sent on my way.  My doctor and nurses were absolutely amazing and my Mom drove straight out to stay with me.  I was glad to be able to come home around lunchtime on Saturday as I was worried I would end up admitted again.  Thankfully my follow up with my GI specialist is next week (thanks Mom!) so hopefully we can talk about a new game plan.

I’m still taking my Humira and I’m into my sixth week right now (yesterday was my injection day).  At first, I had high hopes for this treatment plan, I was started on the IBD dose which is a higher loading dose at the start compared to the psoriasis dose, arthritis dose, etc.  At first, things seemed to be going well, my psoriasis actually cleared up after just a couple of weeks.  I did have to start taking another steroid medication to help with my GI issues until the Humira kicks in (usually by week six to week eight) so I’m still on that daily until the end of May.  It is similar to Prednisone but it doesn’t cause as severe of side effects, it also doesn’t work as well as Prednisone so that kind of sucks too.  At this point, I’m feeling a little bit let down.  The whole point of rushing to get me on Humira was the fact that everyone I spoke to thought it would be THE treatment to help me.  After all, they figured it would treat at least three of my autoimmune diseases and at this very moment, it feels like it’s doing absolutely nothing.  I know it’s still early and there is still time for improvement and I am trying very hard to believe that it will still help but that can be tough to do on a good day, add in the consistent bad days and painful symptoms, and it’s not easy to keep the hope alive.  I do know that it’s not time to scratch Humira off the list just yet as there was talk at the beginning of treatment in regards to increasing my dose or my frequency in order to gain more control.  So with those options, we could possibly go to 40mg weekly as opposed to bi-weekly or take my 40mg bi-weekly dose and bump it up to 80mg.  I’m totally open to playing around with dosage, etc. but the challenge currently is getting ANYONE to respond to me.  In all fairness, one of my specialists did respond but unfortunately they were not the prescribing specialist so they weren’t really able to make the change.  There are other treatment options too if Humira doesn’t end up achieving the desired outcome but again that’s not on the table at this moment.

Another thing that has been going on lately has been in relation to my ability to eat or I guess it’s more like my inability to eat which still hasn’t improved much at all compared to before.  I can sometimes, and this is becoming more and more difficult, eat really, really overcooked rice noodles and as absolutely delicious as that sounds it’s not really all that great.  I’m struggling with Boost and Ensure as well, although the clear diet Boost (looks more like juice in a juice box) is still somewhat manageable for me.  When I was admitted to the hospital back in early March, the dietitians that saw me a few times got me started on a new formula drink called Vital Peptide.  It is made by the same company that produces Ensure but the Vital Peptide is specifically made for patients with IBD/GI issues.  The formula is already partially broken down so when you drink it, it’s a little easier on the digestive system and surprisingly it doesn’t taste awful.  So as good as this sounds, there is a catch…it’s unbelievably expensive.  Let me lay it out based on what my doctors ordered and cost, etc.  So when I was discharged from the hospital, my hospitalist wrote me a prescription for the Vital Peptide 1.5 cal, I took it to my local pharmacy and asked for them to source it out, get pricing and let me know.  Once I heard back from my pharmacy, I contacted my insurance company and asked if there would be any available reimbursement.  The response was that no they do not in fact provide any reimbursement for food items, supplements or weight management tools…weight management tools.  Now let me be clear, this formula that I need is just that, a formula.  It is my only source of nutrients at the moment and my only sustainable form of nutrition.  I get that they won’t reimburse for all of those other things because those are choices, I do not have a choice.  You may be thinking well yeah but it can’t be that bad, just suck it up and pay for it.  Well sure that sounds like the easiest option but like I said, it is pricey.  My doctors want me to aim to drink two to three bottles per day; the big goal was three so I’ll base my math off of that.  One order of Vital Peptide is thirty bottles, at three bottles a day I would require three cases (or 90 bottles) for one month worth of formula.  So one case is $100, I would require three to meet my doctors advice which would work out to $300 a month.  That is more like a grocery budget for an entire family, I’m sorry but that, that is ridiculous!  Not only am I annoyed that the company that produces this formula is making it absolutely not affordable for patients like me but I am equally as annoyed at my insurance company who wrote me off entirely.  This is not some “lifestyle choice” it is a medical necessity for me.  Even the wonderful pharmacy assistants that I go to were very surprised at the lack of help that I am receiving.  They did their best to see if I qualified for any other assistance but I don’t.  Anyways, thankfully my parents are the best and they helped me get a case and I’m doing my best to make it last.

Since I am already on the topic of meal replacement/formula drinks, I want to discuss something that has really bothered me lately.  I have seen many posts online where people are comparing Ensure and/or Boost to other meal replacement/protein powders, etc. and I find it both irritating and somewhat negligent and let me explain why.  Products like Ensure, Boost and Vital Peptide are specifically formulated to sustain patients that are not receiving the right amounts of nutrition.  I will be the first to stand up and say that these products, although not exactly healthy, are important.  For example, I can’t tolerate solid food which requires me to stick to a liquid diet but those liquids have to provide me with nutrition.  So, while your interpretation may be that the products are all bad and people shouldn’t be drinking them and how dare they provide this stuff to people who are ill and/or dying, they are necessary.  Throughout my health journey, multiple doctors have assured me that I can survive on these products if it gets to the point that, that is my only option.  So for example, comparing Ensure to a meal replacement that has been marketed for those that are trying to lose weight, gain muscle, or whatever is irresponsible marketing in my opinion.  Formulas that are put on the market are a source of macronutrients, micronutrients, vitamins, etc. they’re not just a bunch of crap in a bottle.  Do I love them? Hell no, I wish I could eat whole foods instead but the reality is, my stomach is in charge and if this is what it can tolerate right now, well then, that is what I will drink.  Another important factor is medication and the combination of those with formulas and meal replacements.  As someone who is on 17 different medications a day, the liquids that I ingest cannot interfere with those medications.  The formulas that I buy are generally safe enough and I have looked up any contraindications and my doctors have given the green light as well.  Someone who perhaps doesn’t think of these things, doesn’t understand the risks, etc. may just assume it’s safe to switch because everyone is marketing these “safe” and healthy meal replacements.  I guess the important message here is that meal replacements compared to a formula for someone who requires adequate or additional nutrition due to illness or disease are two very different things and it’s important to understand that there are many reasons people use formulated shakes as part of their diet.

Lastly, about two weeks ago I had my stitches from the muscle biopsy removed and everything seemed ok with that (which is good), I go to see a new rheumatologist in a couple of weeks, I go back to see my specialist at Sunnybrook end of May and my GI specialist here in town next week.  The new rheumatologist will be assessing my psoriatic arthritis situation so I’m looking forward to that appointment since the last rheumatologist I saw was not very helpful to be completely honest.  My favourite thing he did was ending his dictation note with “and I will not see this patient again in my practice” well alrighty then, don’t you worry about that! Otherwise it’s just follow up appointments here and there.  When I go back to Sunnybrook, the specialist will be giving me information on what to know about Ehlers Danlos Syndrome (EDS) and also information that I need for other doctors, dentists, optometrists, etc.  EDS can cause lots of other issues other than just lax joints so it’s important that whoever is treating me is doing it in the safest way possible.  I will share more about all of that later on.

My next step or I guess my goal for my follow up appointments will be discussing IV hydration at home to avoid dehydration and ER visits.  I want to open the dialogue with my doctors about the possibility of a port, IV fluids that I can administer myself when needed and the possibility of a temporary tube to allow my GI system to rest.  This is something I have researched extensively and I have found research articles that support these interventions that I’m hoping will help my doctor’s work with me.  A doctor by the name of Dr. Grubb conducted a research trial recently on POTS patients and whether or not IV saline was a beneficial tool to help treat patient’s symptoms.  Thankfully that article was published and I will be referencing that during my appointment.  I think one of the issues is that my specialists are still focused on making me feel better and having me just go back to “normal” life.  As much as I want that, right now, we are only at the stage of improving my quality of life.  As sad as it sounds I’m currently focusing on treatments that will make me able to get out of bed, I want to be able to shower, wash my hair AND go outside all in the same day.  That is what I am aiming for right now and it’s sad because at 29 things should be way different.

That’s it for now, I know this post was more of a venting session than anything but it is issues such as all of these that can really break someone down and it’s constant!  If it’s not food, it is medicine or medical supplies, or testing, etc. it’s freakin’ expensive to be sick!  I feel terrible because it’s not just me that has to carry these burdens, it falls on my family too and that truly sucks.  I seriously find it so ironic that my main goal in life was to dedicate myself to taking care of others, yet here I am, needing others to dedicate their lives to taking care of me.

Well that’s all I’ve got for you today.  I’ll update again soon and please cross your fingers for me that my specialists will listen to me over the coming weeks and we’ll be able to reach some sort of agreement in regards to additional treatment options.

Wishing You All Health & Happiness,

Lyndsay

**Disclaimer: I am in no way affiliated with any companies or products mentioned in this post. As always, I’m writing from personal experience and any and all questions and/or concerns in regards to your own health should be discussed with your medical team.**

Trip to Toronto for my Double Appointment Day & New Diagnoses…

Happy (very gloomy and rainy) Thursday! As promised in my last post earlier this week, I said that I would update about my two appointments in Toronto (Wednesday) so I’ll do my best to explain what I have been diagnosed with and where we’re going from here.

The first appointment was with my immunologist at St. Michael’s Hospital, he has diagnosed me with mast cell activation syndrome (MCAS).  So what is mast cell activation syndrome? Good question, I didn’t know either but I’m going to use a description from a research article, it says: “Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient’s presentation.” (Molderings, Brettner, Homann, & Afrin, 2011).  So basically, it is an immune system disorder where my mast cells don’t work properly and they release certain chemical mediators inappropriately which cause a variety of chronic issues and/or allergic reactions (including anaphylaxis).  In order to treat my symptoms I was started on ranitidine and cetirizine.  Ranitidine (or as you may know it as, Zantac) is often prescribed to reduce acid in the stomach for people suffering with indigestion and reflux and cetirizine (also known as Reactine) is what you would take over the counter to treat seasonal allergies.  So how do these help MCAS patients? Well ranitidine is a histamine-2 blocker and cetirizine is in antihistamine so for people with MCAS the two medications will attach to histamine receptors and prevent the histamine that is released from the mast cells from attaching instead.  There are long term stabilizing medications but at this point in time the two that I have been started on have reduced my symptoms quite a bit so my immunologist wants to wait as I’m on so many medications and we’re still waiting to see if Humira is going to work.  He didn’t want to add another medication or medications and cause that to confuse my other specialists if I was having reactions, etc.  I will go back in 6 months for a follow up and then we’ll decide which medications to use, unless I start having issues before that in which case I would follow up sooner.

Then we made the drive up to Sunnybrook where I had my first ever appointment with an amazing specialist who works in the dermatology department, this doctor also specializes in Ehlers-Danlos Syndrome (EDS).  So patients that have POTS and MCAS are generally going to have a form of EDS, this is the ‘trifecta’ as they like to call it.  First, we met with a medical resident who asked me all kinds of questions in regards to my past medical history, family history, etc., then she herself performed a specific set of tests with me that are used to diagnose EDS, it is based on something called the Beighton Score.  There are five different things that people with suspected EDS are asked to do and for each thing you can do you receive points.  For adults, a positive Beighton Score is 6/9 or higher, I scored a 6/9 and out of the five things they ask you to do the only one I couldn’t do was bending my knees backwards by 100.  The only reason for this is due to the fact that I more than likely have psoriatic arthritis in my knees and that would prevent me from bending my knees further than normal.  So based on my history and my Beighton Score I was diagnosed with EDS yesterday, I was sort of expecting it but it is still difficult to hear that it’s all true.  The last thing (that I was NOT expecting at all) was a muscle biopsy.  This biopsy is sent for testing and provides more information in regards to the collagen in my body, etc.  So for that they have you come into a procedure room that has 4 stretchers and curtains, they have you lay on a bed (on your stomach), the doctor and nurse come in and they cleanse the area for the biopsy (it was taken from my lower back area on the right side).  Once ready to start, they inject lidocaine with epinephrine into the area (this freezes the site) and then they use a 4mm punch to go through your skin, down to your muscle and they remove a piece for testing.  One issue that people with EDS face is a lack of response to localized freezing and also sedation.  So they made sure to inject a ton of freezing into me, which worked for the actual biopsy stuff but had already worn off by the time I got to the car.  Anyways, today and probably for a week or so it feels like I’ve been kicked in the back.  I have 1-2 stitches and they need to stay in for three weeks because people with EDS also heal much slower than someone without EDS.  To say that this diagnosis explains so much of my life is an understatement!

Ok, I’ve gotten a bit ahead of myself here, I’m sure you’re all wondering what the heck EDS is.  “Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.  The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.  For those who meet the minimal clinical requirements for an EDS subtype—but who have no access to molecular confirmation; or whose genetic testing shows one (or more) gene variants of uncertain significance in the genes identified for one of the EDS subtypes; or in whom no causative variants are identified in any of the EDS-subtype-specific genes—a “provisional clinical diagnosis” of an EDS subtype can be made. These patients should be followed clinically, but alternative diagnoses and expanded molecular testing should be considered.  Please remember that an individual’s experience with an EDS is their own, and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant solely to distinguish an EDS from other connective tissue disorders, and there are many more possible symptoms for each EDS than there are criteria.” (The Ehlers Danlos Society, 2017).  So, they believe that I have EDS-hypermobility and I go back in six weeks to follow up, review the results of my biopsy and discuss things I need to know in order to live with EDS.  The specialist will also provide me a list of things I need to inform my other doctors about in order to keep me safe and healthy.

So, overall the day was productive but it was unbelievably long and stressful.  I have to send a big thank you to my Mom who drove me and came to both appointments with me.  I’m sure it’s not easy for her to have to sit through these appointments and find out more issues that I have medically but her and my Dad have been such amazing supports for me and I honestly can’t ever thank them enough.  So that’s it for today, I need to go rest and ice my back before I can’t move anymore. 🙂

Wishing You All Health & Happiness,

Lyndsay

P.S. I have attached links at the bottom of this post that show all kinds of information on MCAS, EDS and the Beighton Score if you want to learn more.

http://www.mastocytosis.ca/masto.html

https://ehlers-danlos.com/

https://ehlers-danlos.com/eds-types/

https://ehlers-danlos.com/wp-content/uploads/Beighton-Score-2017.pdf

 

References

Molderings GJ, Brettner S, Homann J, Afrin LB. Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options. Journal of Hematology & Oncology. 2011/4/10. doi:10.1186/1756-8722-4-10.

The Ehlers Danlos Society.  (2017). What are the ehlers danlos syndromes. Retrieved from https://ehlers-danlos.com/

Chronic Illness & Friendship…

Happy Sunday all my lovely readers!  I know it has been longer than I anticipated between my last post and this one, I’m sorry! So quick update, I’m now three doses into my Humira (noticing small changes which is very good!), I’m still on the new steroid medication and it seems to be helping as well, and this week I go back to Toronto for two appointments.  The first appointment is with my immunologist at St. Michael’s Hospital, he will discuss the plan for treatment of my mast cell activation syndrome, the medications he put me on last time I saw him have made a difference so we will see what he wants to do.  Then we go to Sunnybrook where I will meet with a dermatologist who specializes in treating hyper mobility.  I have issues with my feet and joints, as well as, some other concerns so we’ll see what he thinks and go from there!  I’ll update about my appointments and their outcomes later this week.  Since my appointments are downtown, I will stay with my Mom and Dad overnight.  Wednesday will be busy and stressful but my Mom is amazing and I know she will help me through it.

Today, I want to write about a big topic that is personal and somewhat emotional.  I want to discuss friendships, chronic illness and the impact that they have on each other.  Throughout my time being sick, I have had to learn to accept many things and find ways to move on and not let them effect me too much.  This can be a challenge as it’s not always so easy to forgive/accept and forget but it’s especially important for someone with chronic illness to figure out how to do this because of the impact it can have on your health and your diseases/conditions.

Part of dealing with chronic illnesses involves building a strong tribe of people who you know will have your back no matter what.  This tribe of people, your people, can consist of family, friends, neighbours, etc.  No two tribes are the same and there is no one size fits all.  Some may not have family that support them so their tribe consists of friends, some may have a mixture of family and friends, etc., the whole point is that these are people who will support you, love you and carry you through, even on your worst days.  So I have my tribe and it consists of many different supportive people (including friends I made after I met Ryan, thanks for checking on me not once but twice while in hospital Ash!) but I can say it does not consist of the people who I believed at the beginning of my illness would always be there.  Chronic illness takes a lot of things away from you, including your independence, your ability to make plans in advance, your ability to go out in public, and the list goes on.  I cannot make plans weeks in advance, a lot of times I have to cancel the night before or the day of and I’m immunocompromised so I have to be cautious of who I’m out with and the people that I’m around.  Usually, due to these limitations, people slowly drift out of your life.  Your friends no longer bother to invite you anywhere, you see your friends making plans and going out together and you are no longer included at all.  I can tell you, it hurts, a lot.  It’s not my fault that I got sick, it’s not my fault that my days can be unpredictable, it’s not my fault that I can no longer drive.  This is my life now, it will probably be my life for a very long time but it really sucks when people completely cut you off, especially when it involves people who you thought you knew and who you believed were better than that.  I’m working on getting passed this issue, it isn’t easy, and it never will be.  I can say that I have made progress and it eventually starts to hurt a little less.

So, with that being said, I’d like to talk about the friendships I have formed BECAUSE of my chronic illnesses.  The first person I met is my friend Ashley, I was put in touch with her by a lovely lady that I went to Nursing school with (thanks Heather!) and I am so grateful that I “met” her.  Ashley has a lot of the same health issues as I do and she was so amazing right from the first day we started talking.  She let me ask her a billion questions, I explained my symptoms and she listened, offered advice and just related to me.  We’ve been in touch ever since, getting each other through some tough times and also sharing in good times as well.  We haven’t met face to face yet but it will happen, guaranteed!  Ashley, you are a wonderful, caring, and loving best friend and I am so lucky that we connected with each other.  I admire your strength and perseverance during difficult times and you inspire me to always keep fighting.

Then I met Amber, we connected through a chronic illness support group on Facebook.  Amber is another friend that I have not met face to face but again, it’s just a matter of time and being healthy! Amber and I connected over our passion for Nursing and our heartbreak of having to leave our careers in order to care for ourselves.  To say that finding someone so similar to me is awesome is a total understatement.  I often joke that I am the Canadian version of Amber and she is the American version of me! Amber, thank you for always being there when I need to talk, or cry, or vent; I know that I can talk to you without judgement and with complete understanding from you.  You are a wonderful Mom, wife, daughter, sister, and friend.  I am so lucky to call you one of my best friends.

Another very important person to me is a colleague that was on the same line as me at work.  She also became sick shortly after I left work; she is an absolutely incredible human being.  She was someone that I looked up to frequently at work and even now when I can turn to her for understanding and advice through our journey with illness.  I hope you know who you are, I am so grateful for you and our Facebook chats!

There are also the many amazing people that I have connected with through social media.  Through Facebook support groups I have met some wonderful people who are so supportive and willing to help.  A few I have added to my friends list who are always willing to chat online.  Through Instagram I have connected with chronic illness patients from Canada, the US, Europe, etc.  It amazes me that thanks to social media I can talk to someone half way around the world about the same disease that we both have and the support is absolutely one of a kind.  I recently joked with my friend from the UK that having chronic illness friends in different time zones means that we all have 24/7 support!  Of course there is my friend Sarah from Instagram who I wrote about in a previous blog post.  She is one tough lady and I’m so glad to know her and to have the privilege of her sharing her extensive knowledge with me.  Sarah, if you’re reading this please know that you are an inspiration to me.  The battles you go through are pure hell but you go through it with such grace and bravery.  Also through Instagram, I met Mara who is many things, including an actor, a model, an advocate and a survivor.  Mara you are one inspiring lady and you are funny as hell! The work you do and the awareness you work so hard to share is inspiring.  Thank you for always knowing when I need a big laugh and some sort of sweary intervention because sometimes you just need to give it the middle finger and move on!

Well, there it is chronic illness and friendship, it’s not easy, none of this stuff has been easy but I know who my people are and that’s what matters.  Also, please know that if I didn’t mention you specifically in my post, it does not mean that I value our friendship any less.  There are so many people that I have connected with and learned from and I would never take that for granted.  You have all made an impact and I’m lucky to call you my friends.

As I said, I’ll get a new blog post up after my appointments later this week and I’m thinking I’ll combine that with the topic of chronic illness and family.  Thanks again for reading.  I hope you all enjoy the spring like weather that has moved in and hopefully it’s here to stay!

Wishing You All Health & Happiness,

Lyndsay

Where Have I Been?? & The Spoon Theory…

Hello! I’m sorry for being MIA for so long everyone, it has been an eventful couple of weeks over here and once again another week has come and gone with no blog post.  So, I’m going to use this time to play a bit of catch up with you all and to talk a little about the theory I use to gauge my chronically ill life.  More specifically “The Spoon Theory” that was created by a fellow chronically ill woman by the name of Christine Miserandino.  I hope to be back next week with a really good post for you all to enjoy as I should have a bit of break from appointments, etc.  That being said, here we go!

Sunday, March 5th I was dropped off at the emergency department suffering from my usual symptoms of pain, dehydration, nausea, vomiting, etc.  I usually push it as long as I can to stay home so by the time I hit the ER, I really need to be there.  I was seen by an ER doctor who has treated me more than once so she was right on the ball with ordering blood work, IV fluids and medications.  I spent the whole day in the ER praying that my “bandaid” solution would work again and I would be able to go home.  Unfortunately, after eight hours, there really hadn’t been any improvement so at that time my ER doctor decided to admit me as a medicine patient.  Disappointing? Yes.  Somewhat relieved? Definitely.  I was so sick, I sometimes really forget how bad my flares can actually be.  Anyways, the goal was to stick with IV fluids and medications and hopefully give my system a rest and then I’d be good to go.  Now the other goal, the really important one, was to avoid steroids if possible!  At this point I was only one dose into my Humira but I wanted to try everything else before going the steroid route.

So, as the week went on, things were going pretty good.  There were a few bumps here and there but overall I was improving.  Then the dietician decided we should try food…I wasn’t keen on this suggestion but figured I would see where it went.  The theory was it would be better to trial solid foods while admitted so that way they could intervene if things didn’t go well.  So I agreed (which in hindsight I should not have done) and they started bringing me meals.  The first day I tried some gluten free cereal and a gluten free muffin (two bites of each), wasn’t horrible.  Then lunch came, some sort of pork (I think?), steamed broccoli and I’m pretty sure mashed potatoes, I passed on that one.  Dinner was no better, gluten free bread with chicken salad (I think, again it was grey so who knows) with some fruit.  I gave it my best shot and then totally regretted it within 20 minutes.  So by the time I saw my hospitalist, I had backtracked a little and he fully agreed that we needed to go back to full fluids and stick with what was working.  Something about hospital food, it sucks and if you’re someone who is having difficulty eating, it really doesn’t entice you to want food.  I was also served a non gluten free fluids tray and I almost ate it! That was angering to me but it was dealt with after the fact and hopefully they will be more careful in the future.  I am just SO glad I didn’t eat any of it!  After the food debacle and going back on full fluids I again started to feel better so on Saturday, March 11th my hospitalist discharged me to go home!

I was packed up and ready to go as soon as my Mom showed up to drive me home.  It felt so good to get home, have my own things, my own shower, my own bed, etc.  Saturday afternoon/evening I started having some abdominal pain, nothing crazy but definitely annoying.  I figured I was just adjusting to all the commotion of being admitted and then finally getting home.  So that night I went to bed and didn’t think much of it until I was still up in the middle of the night due to the pain.  Sunday morning the pain was constant, stabbing, I couldn’t do anything to make it feel better.  So, I weighed the pros and cons, called Telehealth and then called Ryan to drive me to the hospital.  This time there was no waiting, I was triaged quickly, put in the acute care area, blood work drawn, IV in with fluids running and then the dreaded order, IV steroids….I was really hoping to not have to go on steroids again but I was in the situation where there was no choice anymore.  After about six hours, they agreed to let me go home with a prescription for 40mg of Prednisone for five days.  Ryan came by to pick me up and we got my medication filled at the pharmacy and headed home.  Now, for anyone who has not had the pleasure of being on steroids, it is not fun.  For instance, Sunday night I was up the whole night, I felt like I wanted to jump out of my skin, I was tossing and turning, pacing, it was awful.  Monday night I slept on the couch because I just could not relax or get comfortable no matter how hard I tried.  So all of these wonderful symptoms/feelings got to continue for the rest of the week while I was taking the Prednisone.  Any who, they did their job regardless and got me back to my “normal”, I then followed up with my GI specialist who decided to start me on a medication called Cortiment.  It is a new medication that is similar to Prednisone but supposedly won’t cause the same severe side effects; I’ll be crossing my fingers on that one.

After all that excitement, I just laid low for the week, resting and recovering.  I still do not feel too great, I have widespread pain and so much more going on.  They’re hopeful that my Humira will kick in soon and that this Cortiment medication will help ease some of the issues I’m dealing with in the meantime.  I only started the Cortiment on Tuesday so I probably won’t know for at least a week or two whether or not it’s going to help.  So that pretty much sums up why I haven’t been posting much lately, I’m still excited about the blog and I’ve got some good ideas of posts that I’ll be digging into this week.  All of you that are following along hang in a little longer, I appreciate you all and I hope that you’ll look forward to my next post!  Also, thank you to all of you that sent text messages, emails, private Facebook messages, etc. while I was in the hospital and over the last couple of weeks while I’m still unwell.  They mean a lot to me and it brightens my day to hear from you!

The Spoon Theory

Some of you may have heard me use the terms “spoonie”, “spoons”, “spoonie sister”, etc.  So I thought I would give a little more information about what that all means! As I mentioned at the beginning of this post, The Spoon Theory was developed by a fellow chronically ill person by the name of Christine Miserandino.  She used a handful of spoons as a simpler way to explain to a friend of hers the limitations that chronically ill people face.  The terms “spoonie”, “spoonie sister”, etc. are just nicknames derived from The Spoon Theory for chronically ill people and the chronically ill friends they have made.  The theory basically says that each day everyone starts out with lots of energy to do all of the things they want to do.  Whereas, a chronically ill person gets to start their day with a handful of spoons (the spoons represent energy).  Now someone who is a healthy, average person can go ahead and do everything that they normally do in a day with no worries and not even a second thought about energy, fatigue, etc.  For someone with a chronic illness or illnesses we get our handful of spoons each day but we have to consciously be aware of how we are “spending” our spoons.  Even a simple task such as making a cup of tea uses up “spoons” and taking a shower, getting dressed, etc.  The more spoons we “spend” on tasks, the less we have for the other things we need to do throughout the rest of the day.  A chronically ill person could push themselves to do more by “borrowing” spoons but then it’s important to know that we will now have fewer spoons for the next day.  This also helps to explain how one day I may seem like I’m doing very well but then I’ll be in bed for three days straight, I’m constantly thinking ahead and deciding what my priorities are because I can’t do it all anymore and I can’t wear myself out trying too or else that will continue to allow things to get worse for me.

That’s all for this week! I will attach a PDF explanation of The Spoon Theory that Christine put out on her website.  Give it a read; it truly is a good way of explaining energy levels for the chronically ill.

Wishing You All Health & Happiness,

Lyndsay

The Spoon Theory PDF

“Little Brave, Breathe.”

“You are fierce.  You’re a survivor.  You’re a fighter through and through.  Little brave, breathe.  There is a warrior within you.” – Beau Taplin

Thank you all for reading my post last week and for all the wonderful comments that both myself and my soulmate received.  We read each and every one of them and we’re so grateful for all of you! So this week I’m going to discuss my inflammatory bowel disease (IBD), my psoriasis (Ps), psoriatic arthritis (PsA), and the new medication that I have started called Humira.  I won’t go into great detail in regards to my IBD because…well…who the heck wants to read about that?! I do urge you though to check out the links that I’m going to put at the bottom of this post, I’m not going to spend too much time describing each disease because this post will focus on all three of them at once so the links are great resources for more information.

IBD is an extremely awful disease and if I’m being honest, it is really difficult to live with.  Some days are definitely easier than others but the hard days are REALLY hard.  I know people hear the term IBD or inflammatory bowel disease and just think it’s all about poop! When really, there is so much more to this disease and also, not to confuse it with irritable bowel syndrome (IBS) which is also a difficult condition to have, but does not cause the same issues and damage that IBD does.  It has taken many years for me to find specialists that have been able to help me.  As I mentioned in my About Me section of this blog, I have had psoriasis since the age of seven and it’s just now at the age of 29 that we have found so much information in the link between psoriasis and IBD.  I met a wonderful and amazing woman by the name of Sarah through Instagram, her IG username is: sarahsbellavita if you want to check her out, she is also a very talented photographer and artist!  So Sarah also has psoriasis, psoriatic arthritis (PsA) and IBD and all of a sudden I had this major light bulb moment.  You can have a form of IBD that is tied in with psoriasis?!? I messaged her right away and she provided me with so much information and help based on her personal experiences.  Ultimately I am where I am today with my diagnoses and treatment because of her knowledge and her willingness to share with me! So here is big huge thank you to you Sarah, you are amazing, kind and so strong!  You are a true warrior and I’m grateful to call you a spoonie sister.  After speaking to Sarah, I began researching how people with psoriasis can develop IBD as a comorbidity and I was actually shocked that after having gastrointestinal issues my ENTIRE life not one doctor ever said, hey we need to check this out.  The doctors always stuck to the same line “she just has a nervous stomach, she’ll outgrow this” when my parents would be pushing to find out why I was sick all the time.

When I ended up admitted to the hospital in May 2016, I had a colonoscopy done by my new local GI specialist.  When they wheeled me into the operating room for the test, my GI specialist was prepping and I pulled off my oxygen mask and kept saying to him “don’t forget, I have psoriasis, look for the connection!” I still laugh at this part because I was on pain medications and then they gave me a dose of something to relax me just before they sedated me and here I am yelling out instructions to the specialist.  I give him credit though because he smiled and agreed with me.  During that scope he found active colitis and also took biopsies to send off for testing.  Before being discharged home, he started me on a new medication for the colitis and scheduled me to follow up with him in his office.  The medication he gave me is called mesalamine which is an aminosalicylate anti-inflammatory drug.  This medication improved my issues by about 60% which is actually a big deal! When I went back for my follow up, my GI specialist said he wanted me on a trial of prednisone to hopefully really kick the rest of the symptoms out.  So we went ahead with what was supposed to be a quick 3 weeks of prednisone that ended up being a longer 3 months of prednisone.  Two things about prednisone: 1) it is literally a miracle drug and it will make you feel like a million bucks 2) it is also an evil drug that grabs a hold of you and then you have to fight to get off of it and endure your body freaking out because you have taken away it’s miracle.  During the 3 months of being on prednisone, I made two attempts to get off of it (not including the original taper after three weeks) each attempt, by the time I was down to 15mg I was either on the phone with my GI office asking them what the hell to do or I was in the emergency room.  Finally, in December of 2016 I decided that I would do whatever I had to, to get off of prednisone before Christmas and on the 20th I took my last pill.  Prednisone caused me to gain 20lbs., my face rounded out due to a condition called “moon face” and I was just swollen everywhere.  Thankfully, once you stop the medication, as time goes on a lot of the side effects do go away on their own.

So now the big question, am I better?? No.  Once off the prednisone my IBD flared again and I was pretty much back to where I started so at my follow up with the GI specialist we discussed our next steps.  The first thing to do was a test called a calprotectin test, this is done by a lab in Mississauga and basically it allows them to test your sample and determine how much inflammation is present in your GI system.  The test is pretty cool and really expensive but thankfully my GI doctor recently started an IBD program through his office that I was enrolled in so the test was covered for me!  I was his first patient to do the calprotectin test so I thought that was pretty interesting.  Basically what happens is the lab sends you a kit via Purolator and inside the kit are ice packs, sample bottles and foil packaging.  So you do the collection, put the bottle inside the foil pack and then insert the ice packs provided, call Purolator and they send their driver to pick it up and return it to the lab.  About three weeks after doing the test the results came back high which signalled to the doctor that I still have active IBD/inflammation going on.  Once that was done, the next thing was a second opinion with the GI team at Mount Sinai in Toronto.  I went there in January 2017 and saw a great doctor who agreed with everything that had happened so far and also recommended that we move on to a type of medication called a biologic.  So then my GI specialist here in Lindsay and I started talking about my medication options.  Both specialists wanted me on Humira as soon as possible but Humira isn’t cheap, as in it’s $30,000 per year for treatment of one person.  So in order to get me on Humira, I had to “fail” at least two other medications…cheaper ones.  So we trialled Imuran (azathioprine), which is an immunosuppressive medication, I took it for a week and all it did was make me worse so it was automatically considered a fail within the first 7 days.  Ok, so that’s good, we’re getting closer to the medication that I really need.  I asked my specialist what my next option was and he told me that I would have to fail methotrexate.  I was at a loss; they wanted to put me on a chemotherapy drug! So I immediately pulled out my drug guide and read all about methotrexate and all I could think was this isn’t even the medication they really think will help me but I have to take it, suffer the side effects and then see what happens from there.  I was really not sure how I felt, on one hand I know it can be a very successful treatment but on the other hand I just couldn’t wrap my head around it.  Then I got a call from the nurse who runs the IBD clinic at my GI doctor’s office and she told me I had failed methotrexate so we were moving on to Humira! But wait, how did I fail?? I failed because I have not had children yet and would like to start a family in the future, for that reason, methotrexate is contraindicated! So then began the long process of securing Humira for me.

Since Humira is so expensive, it takes a long time for all the paperwork to be processed and for insurance companies to do the necessary work on their end in regards to coverage.  So Humira (and quite a few other similar drugs) use a patient support program.  The program basically holds your hand through the whole process and the case worker assigned to you is responsible for all the paperwork, phone calls, documents, coverage, etc.  It’s actually an awesome idea because 1) I’m sick so I don’t want to be rushing all over trying to organize things and 2) I wouldn’t even know where to start.  Something else that I love about the patient support program is their resources in regards to funding.  If you are denied coverage of Humira, this program will find you financial support and/or compassionate treatment.  Which means that if worse comes to worse; they will give you free Humira.

In the meantime, I was dealing with another situation.  Remember when I said that prednisone is a miracle, well it completely got rid of ALL of my psoriasis.  I have never known what that is like since I was only five or six years old when my skin was clear for the last time.  Now here’s the kicker, once you stop prednisone, your psoriasis comes back…and it’s worse! So not only is it back on my arms, legs, scalp, and face but also in new places like my finger nails, toes, inside my ears, etc.   So while we were working on the Humira coverage (which by the way will also treat my psoriasis) I was referred to a skin clinic in Peterborough.  Since the plan was to get me on the medication, they agreed to see me and assess my psoriasis situation as well.  Now, let me just take a second to say how amazing my doctor and nurse are at this clinic.  I was immediately accepted into a research trial through their clinic as they want to follow my progress on Humira and use data collected from me to help other people who need to start the medication.  My nurse at the skin clinic said that due to all my other illnesses as well as all the medications I take, I will be beneficial for data as I cover a lot of different categories.

After finally getting both doctors on the same page, meeting my nurse at the skin clinic and getting enrolled in the research trial I found out that I was approved for compassionate treatment of Humira because the doctors wanted me on it as soon as possible.  So I was provided the medication for the first dose, second dose and I’m waiting on my shipment of the third dose all at no cost to me.  Which I find amazing and I’m so grateful for the efforts this patient program puts in.  Also, I just found out that as of yesterday I have been approved for three months by my insurance company.  My patient support program has already started the process of getting me more coverage because obviously three months is not enough! Since I’m part of the research trial, I had to complete my paperwork and first injections all together so I was scheduled to go back to the clinic the week after my initial appointment.  I was counting down the days and then I got an infection! Somehow I developed inflammation in my jaw and had to go on antibiotics so they had to cancel my start for Humira (it lowers your immune response so it’s harder to fight off infection).  Again, my amazing nurse got in touch with me, reassured me that another week was not going to make or break me and told me to rest up and get well.

Finally, Tuesday of this week I had my appointment, we went over all the paperwork, questionnaires, etc., then the big moment, the injections.  Now usually I’ll be giving this medication to myself but since the first dose is what they call the loading dose, it involves giving four injections.  So my nurse did two of them in my upper arms since I can’t use those sites myself and then I did the other two in my abdomen.  I won’t lie, I hesitated before I stabbed myself for the first time but then I sucked it up and just went for it.  Not so bad, it’s a stinger but totally worth it if it ends up helping me and possibly putting some of my diseases into remission.  So now that the first dose is done, I will do a double dose (2 injections) at home in another week or so and then I will be on my maintenance dose which will be one injection bi-weekly.  The good thing is, if I’m not really happy with the results or their not as good as we hoped, they’ll change around the dose to one injection every week or whatever will give me the best results.  Being a part of the research trial is ongoing over five years, with follow ups at the skin clinic every 3-6 months.  Every week I have to complete one questionnaire and then on days when I have follow up appointments, there are four questionnaires.  This allows them to follow my expected treatment outcomes, the emotional aspects of my diseases and treatments, etc.  I think this will be a good thing, it provides me with constant communication with a team of specialists who will help me along the way.

The last step to do is send me off for a second opinion from a rheumatologist.  I saw one already a few months ago and he dismissed my concerns in relation to extreme joint pain.  He said I was “old” due to my health deteriorating so rapidly over the last two years and that was the cause of my pain.  He was also sure to put in the last sentence of his dictated report that he will not see me again as a patient.  When I brought this up to the doctor and nurse at the skin clinic, they both disagreed, told me they strongly believe I suffer from psoriatic arthritis and that they have a specific rheumatologist in Kingston who is younger and quite knowledgeable in the field.  Again, Humira will help with this as well but seeking a diagnosis is still an important part.

So there it is three diseases and one treatment all rolled into one blog post.  For those reading and learning about my diseases and treatments, thank you.  I appreciate you all so much and just know that you are helping to raise awareness, you are one more person who now knows about some diseases/syndromes that are not common within the medical field and especially not within the general public.

Wishing You All Health & Happiness,

Lyndsay

Check out these links for a ton more information!

http://www.psoriasis.org

http://www.crohnsandcolitis.ca