Carving Your Path

Over the years of having this blog I haven’t been very consistent with posting but I have been consistent with writing. The challenge for me is deciding what to post and what to keep to myself. But then my mind goes back to when I first started this and why I continued. I started writing for myself as an outlet, but I continued because of the amount of feedback I was given and the amount of people I have helped. I’ve been extremely open while writing this blog. I talk about the real things and the ugly things no one wants to. But I now realize this is why it has helped people.

Something happens when you become physically the healthiest you have in your entire life. It’s not something easily explained. It’s almost like the disease was never there, it never existed… Until it appears again. When I say this I don’t mean the disease itself but the impacts it makes on your life. These can be some of the most frustrating moments in your life. There is no cure for Crohn’s Disease. Symptoms may disappear at times, but it always remains with you. Some how, some way. You face challenges you otherwise wouldn’t. You just have to decide whether this builds you up or breaks you down.

As some of you may know, I have had a lot of obstacles to overcome with my school and career path. I’ve always felt I was meant to work in the medical field. I’ve been holding on to this for years. For those of you who aren’t familiar with what had happened in the past… I was accepted into nursing school and was kicked out because I had negative titers for some immunizations (I never converted when I received my vaccines as a child so I am now not immune to these diseases). We fought and fought with the school but lost the battle. Now that I am healthy and on less medications I wanted to revisit this possibility. I wasn’t ready to completely shut this door. I’m following the proper protocol, with an infectious disease doctor. But my last visit with him wasn’t too promising. Administering some vaccines could be deemed as malpractice. I have my follow up appointment tomorrow. My doctor redid my titers to see if anything has miraculously changed. We’re praying for a miracle but I also need to prepare myself for this door in my life to close.

These are the types of things I am talking about. Now, everyone goes through bad times, and is faced with challenges, but it can be difficult coming to terms with this while living with a chronic illness. This is especially true for the newly diagnosed or patients who have been in remission before. You are never prepared for this. Even, after more than ten years of being diagnosed I am still not prepared. This disease has never ruled my life, it is one-hundred percent a part of me, but it isn’t who I am. I haven’t let it dictate me succeeding or failing. Although it has made me carve new paths along the way, I have to look at this as new opportunity. I don’t give myself any other choice.

This though, is one of the hardest challenges I’ve been faced with. I never thought I’d have to overcome things (because of Crohn’s Disease) while in remission. The frustration is being healthy finally and still not being able to do the things you want to do. Like I said I have been holding onto this career path for years. Closing these doors can be hard but the only way to move on is by finding another one to open. I feel defeated at moments, which you will, but you have to rise up and out of it somehow. Having awareness that you are going face these types of obstacles because of your illness will make a huge impact on how you react and your ability to find the good in it.

Life comes at us hard sometimes, and there are an unlimited amount of ways we can react.  Ultimately though, the choice is ours to carve our own path no matter the circumstance.

-xoMichelle

 

Medical Marijuana: Take a Toke in Our Shoes

Image

Medical Marijuana is finally becoming a hot topic right now in the United States. Although it is still illegal according to the federal government, several states have gone through with legalizing it for either every one over a certain age or for people with certain qualifications. I myself have gained the benefits of pot for my disease. I was asked to write on this topic, which I jumped at the chance because I am so strongly opinionated on it and I believe some people need to open their eyes. There are people out there so sick, who cannot function in their daily lives, and we are focusing on the abuse and recreational use of this drug. Yes, those topics are important and I know there aren’t enough “clinical” trials out there to prove that weed helps Crohn’s patients but everyone out there who disapproves: start listening to OUR stories.

I live in Massachusetts, and as some of you may know (to my relief) medical marijuana has very recently been legalized by 65% of the vote. To give you a background I researched the laws. Right now the rules and regulations are still being set, so no dispensaries or anything are opened yet. Mass can only have 35 dispensaries state-wide and only 5 in each county, so companies are fighting to win the battle to open their dispensary since this is going to be such a massive industry. (www.masslive.com). First, to even be able to carry marijuana or use it you have to be a qualifying patient with medical records to back this up. I have Crohn’s Disease and an extensive Harry Potter novel-length file of medical records (to think someone would even read through those is insane to me). During this period of the law being implemented you are not able to get a legal “Medical Marijuana ID Registration Card” but all you need is a doctors written permission that you are a qualifying patient. I’ve looked into this and it comes at a cost. To receive one of these you have to fill out a sort of application, get copies of your medical records, and pay a yearly $200 fee (roughly… varies from doctor to doctor). And, it is very hard to find a doctor who writes these. I have found one in Northampton, MA who does them. They haven’t released a date when you will actually be able to register in the state to get your ID card but for now this doctor letter will prevent you from getting in trouble if you are using for medical purposes. This letter allows you to legally possess a 60-day supply of medical marijuana which is roughly 10 oz. Even though marijuana is legalized for medical use, health insurances and/or federal agencies are not responsible for covering the expenses. (www.mass.gov).

So far, in Massachusetts there are twenty towns/cities eligible for dispensaries. These include: Framingham, Lowell, Cambridge, Worcester, Shrewsbury, Fitchburg, Leominster, Milford, Holyoke, Springfield, Chicopee, Northampton, Easthampton, Montague, South Deerfield, Greenfield, Pittsfield, Lee, Great Barrington, and North Adams.

Now, enough of the legal stuff. So many trials and experiments are starting now the evidence is growing. My doctor in Boston is actually doing research right now on this controversial topic. Although they say that marijuana isn’t proven to help the huge problem in Crohn’s Disease of inflammation, it can help a lot of the symptoms drastically. Since Crohn’s Disease has no cure, we are forced to only treat the symptoms it causes. People don’t realize how much medicine us Crohnies have taken and how much toxic stuff we have put in our bodies just in an effort to control our symptoms. It’s insane. In fact, side affects from all these medicines I personally have been on have ruled my life at points. Medications I was on years ago still affect how I live my life to this day. I’ve been on so much prednisone I have bone degeneration in my spine and hips at age 21. I have nerve damage in my feet from certain meds I’ve been on. People don’t understand how far we go to feel even a little bit better. I was on one drug not too long ago (Natalizumab) that was still in trial. My doctor warned me multiple times and made me sign my life away because a rare side affect from this was a rare brain disorder that was irreversible and fatal. Yes it was rare, but to think a drug could even do this to me was terrifying. These medicines are poisoning us and marijuana can be the next huge thing if we let it. Experimental evidence actually compares cannabinoids, a molecule in marijuana, and endocannabinoids, which are produced in our gut. These control the barrier in our intestine lining and using plant forms could be helpful in repairing this. (www.sciencedaily.com).Image

I have smoked marijuana myself to control my disease. I unfortunately have such a hard case that right now nothing really is helping me, but if it weren’t for pot I would be in the hospital at times. It some days is the reason I get out of bed and am able to eat. I am not an avid user but I picked my brother, Greg’s, brain for his experiences with it. He was diagnosed with Crohn’s disease last year and treats himself by smoking weed. He invested in a vaporizer because it is a much healthier alternative to smoking and still cost effective. My brother has similar symptoms to most Crohn’s patients including reduced appetite, upset stomach, diarrhea, painful bowel movements, a “sweaty butt”, weight loss, and energy loss. To control these symptoms completely he has to use his vaporizer once a day and when he doesn’t take his “medicine” aka marijuana his symptoms do come back. When I asked him about eating his response was, “It helps me regulate the food I take in because it triggers my appetite. Without it, it is hard for me to eat anything at all.” I know first hand that statement is true because days I cannot eat my mom is at me to smoke. And believe me she is against all of that, but as a mom she sees her sick kids and will find anything that might remotely help. With me, at 92 lbs, every pound on me is crucial. If I go below 90 lbs my doctor admits me to the hospital and/or starts me on a large, frustrating dose of prednisone. One question a lot of people might wonder is overtime do you have to smoke more and more? Or in other words do you build up a tolerance. Greg’s answer to this was no. He has been controlling his symptoms with cannabis since the day he was diagnosed (a little over a year ago). He said “As long as you control the amount you use in each session as well as the amount of sessions you have per day, you will not have to increase dosage.” This is very true. He went on to explain that abuse is the only way to build a tolerance and to control his disease heavy use is not necessary, and he reams more benefits from limited uses per day along with a controlled amount of weed. Greg’s good quality of living is because of his marijuana use. He is on no medicine besides cannabis and feels great. Yeah, we all have our days, but he works 40-60 hours a week as a demanding store manager and still has the energy to go out with his friends. In other words, he is able to live a normal life without putting toxic chemicals (medications) into his body. He says he tries to make it through the day before using because he says he functions better with a clear mind without the “high” weed generates, as any other medication could cause including pain medications a lot of Crohn’s patients have to take. On the controversial topic he ended our conversation with: “In a perfect world it would be accepted to do to relieve symptoms but in the professional business world it hasn’t reached that point yet, so priorities prevail and health comes second. Kind of sad but it is what is it.”

So, take a second to think about this. Why are we treating marijuana as such a horrible illegal drug? Yes it can be abused. But as a college student I see more drugs being abused than I can even fathom. Adderall, pain medication, alcohol, everything. It is actually disgusting to me. I think about it and I’m putting all of these awful medications prescribed for me in my body which you all think is okay, but when I try to smoke a little bit of weed to feel better I get judged and looked down upon as some “druggie”. And if you are a parent with a child who has Crohn’s disease, he or she is around drug abuse everyday in this world you can’t deny that or shelter your child from it, but provide them with the tools and information to make good decisions about it in a controlled environment. I definitely am not condoning using weed, but it is on the edge of being a medical miracle. Don’t judge someone on their medical decisions because if it were you and your health it would be a different story. Walk a day in our shoes and there would be no more controversy.Image