“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,
**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.**