Tuesday, June 20, 2017

Where I've Been

Well I'm back - and hopefully for good!  I cannot believe I haven't posted on here in over four weeks, that is the longest I've ever gone without sharing something on here in the almost four years that I've been blogging (and hopefully it'll be the longest I'll ever go!).  I wish I could say that I've been gone so long because I've been doing so many fun things that I just haven't had time for this space, but unfortunately I've had to take some time off because of my health.

I realized that to start up again after such a long break I wanted to take the time to explain to all of you what's been going on with me.  As I've mentioned on here before I'm a deeply private person so opening up on here about my private life isn't always the easiest thing for me, in fact it's actually taken me some time to write this post because I don't love talking about myself and have been putting it off.  However, I think that when I started my blog I did make an agreement to share things on here and I always want to be completely transparent with everyone who is kind enough to take some time out of their day to follow along here.  I also feel like after being gone for a while I owe an explanation to those of you who have stuck around through it all.

I love that when I need it to be this space is an outlet for me and I can share what is going on in my life with a group of people who have done nothing, but support me, which means more to me than you'll ever know.  I also think that it's important to use my platform from time to time to raise awareness for what life with chronic illness is like.  I started this space as a "break" from my "real life" - doctors' appointments, medical tests, medications that are sometimes worse than the illness itself, etcetera.  However, I think that I do need to use the voice I've developed to speak up for those who are in the same situation that I am who can't and give you all a glimpse into what life is like when you feel like, for lack of a better word, shit, all the time.

I think that even though it's hard for me to write about I'm going to try to share more personal posts on here a little more frequently than every six months.  I think it's important to show what's going on behind the scenes beyond my favorite skincare products and what clothes I'm wearing.  Not that I won't be sharing plenty of that because let's get real that's what I love and what I started this space for, but I'm just going to be a little more liberal with sprinkling in posts like this, which I hope is something that will interest all of you.

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So now that I've gotten all of that off my chest it's time for me to explain what's been going on that's kept me from here the last few weeks and what's been going on in my life the last few months that led up to it.  If you're new around here, don't remember what I'm talking about, or just want to refresh your memory you can checkout this post which is a big life update from November and a smaller update at the end of this post from December.

For a little recap, incase you don't want to reread the post from November, I have suffered from two medical conditions for years.  The first condition is Reflex Sympathetic Dystrophy (RSD, which is also known as Complex Regional Pain Syndrome, CRPS).  RSD is "is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration.  CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale" (RSDSA) and I've had that for thirteen plus years.  The second condition is Crohn's Disease which is an autoimmune "lifelong inflammatory bowel disease [which causes] parts of the digestive system [to] get swollen and have deep sores called ulcers," and I have had that for the last nine years (WebMD).

Then in April 2016 I began suffering from migraines, which very quickly became chronic migraines as they went from a few days a month to a few days a week to every single day.  And finally this past September I was diagnosed with Rheumatoid Arthritis.  Rheumatoid Arthritis is "a chronic inflammatory disorder that can affect more than just your joints. In some people, the condition also can damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels.  An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body's tissues." (Mayo Clinic).

The chronic migraines leave me with terrible headaches, light sensitivity, nausea and more.  Nevertheless, I consider myself fortunate that they didn't develop until about a month before I graduated from college.  While they're difficult to deal with at least I was able to get through almost all of college without them (and I'm always looking for the positive side of things 😉)!  I had a rough nine months dealing with the migraines, with the month of February 2017 being the worst as I had a no break from a mind numbing headache for more than thirty days.  However at the end of February I had my first round of Botox injections for the migraines and the results were literally life changing and within a few days I was completely headache free! While I was still dealing with all of my other health issues not having an incredibly terrible migraine was so amazing.  I was lucky enough to have my first treatment last for a full eight weeks and I maybe had two headaches in that time, which was incredible for me. Unfortunately after the eight weeks it did start to wear off and you have to wait a full twelve weeks between injections, but thankfully the migraines I had in those four weeks I had left until my next injection appointment weren't as bad as my pre-Botox headaches.  I have since had my second round of injections and while they aren't working as well as the first round did I still see a huge improvement to what my headaches were like prior to Botox, which is great.

I wish I could say that the Rheumatoid Arthritis (R.A.) treatment has been going as smoothly as the migraine treatment, but that has not been the case.  The R.A. gives me relentless joint pains and stiffness (including severe TMJ).  I already take Humira for my Crohn's disease, which can also treat R.A., but it does not completely treat mine so I needed to add in another medication.  I tried one that made me really sick (I was so nauseous I couldn't eat or really get out of bed) so we moved onto Methotrexate, which is used to treat R.A. that hasn't responded to other medications.  Methotrexate is a very strong medication that really takes a toll on your body and is a medication in which you can get worse before you get better, which has been the case for me.

My doctor prescribed Methotrexate as an injectable and there are two types of injectable Methotrexate, one with a preservative and one without.  The first dose I recieved of Methotrexate at my rheumatologist's office was the one with the preservative, after leaving the office my face and tongue began to swell and my throat started to close up.  I was able to force some Benadryl down my throat and was rushed to the hospital where I had to spend the whole day under observation.  This form of Methotrexate stays in your body for one week so for an entire week after the initial injection my throat would spontaneously close up, but thankfully the doctor at the ER sent me home with all of the medications they would give me there so I did not have to keep going back everyday.  After this ordeal I had to undergo allergy testing to determine if I was allergic to Methotrexate or the preservative in Methotrexate and it turned out that I was allergic to the preservative so I now take an injection of preservative free Methotrexate once a week and have been for the last several months.

As I mentioned above Methotrexate takes a toll on your body and has side effects such as nausea, vomiting, and drowsiness, just to name a few.  In addition to these it can damage your organs so there is a whole list of symptoms I have to keep an eye out for.  Additionally for the first three months I had to get blood work once a month and was just told this past week that I can now get bloodwork every three months 😊.  Each week when I do the injection I feel really sick for several days, but as the months are going on the side effects are beginning to lessen, which is good.  The other issue with R.A. is that it can affect so many different parts of your body so because of it I have been having to go to so many more doctors to get things such as my eyes and heart checked out.

Both the Humira and Methotrexate are immunosuppressants, which means I have to be very careful with germs, I get sick very easily, and it takes me a long time to get better when I do get sick.  This is where my problem for the last few weeks comes from.  The third week in May I developed a stomach bug and it stuck around for almost four weeks.  Thankfully I wasn't vomiting, but I had extreme nausea (which nothing was helping to get rid of), stomach pains, exhaustion, and just generally felt very run down.  I was also having a really hard time sleeping, which was just making everything worse.  I had little to no desire to do anything and simply posting on Instagram would take up all of my energy for the day.  Due to the way I was feeling I just had to take a break from blogging because I could not even write a blog post I felt so sick.

Finally at the end of last week I started to feel better (which felt like a miracle) and have been spending some time on everything I fell behind on in the past month.  I really couldn't do much of anything so I have had so much stuff to catch up on.  I am such a Type-A personality so not being able to do basically anything at all was making me incredibly stressed and anxious so it was nice to be able to relieve some of that and get some stuff done.  I also decided that I wanted to wait until I was feeling completely stomach bug free to start posting on here again so I wouldn't have to start and stop and I can thankfully say that yesterday was finally that day!

***

I'm sorry that this post landed up being such a long one, I didn't really intend it to be this much, but there was really no way for me to explain things without explaining everything.  While I am stomach bug free (and so happy about that!) I am still dealing with a lot, as I'm sure you can tell, so I can't make any promises that I won't have to take a break again, but I can say that I will do everything I can to make any breaks much shorter than this one has been.  I also want to give you all the heads up that my goal for myself right now is to post on here three days a week and possibly four if I'm having a good week (so I hope there are lots of four post weeks!).  I am so excited to be back to creating content and have some great posts and fun collaborations coming up that I can't wait to share with all of you!  Also if there's any posts that you would like me to do please let me know!

Thank you so much to everyone who has stuck around during my break and for reading to the end of this crazy long post.  I hope I was able to give you some insight into what's going on in my life and if you have any questions, as always, please feel free to ask them below.

                    

15 comments:

  1. Girlfriend- you have been going through so much! Oh my goodness. I will be thinking of you going forward, and I admire you positivity!

    I began suffering from chronic migraines midway through my freshman year of college, and dealt with them all through the rest of schooling. I never tried botox- I was lucky to find a prescription med that helped with them somewhat. Amazingly when I moved across the country for my new job a few months ago... I pretty much stopped getting them. How weird is that?! Now I rarely have them. I pray they continue to go away for you too!

    xoxo A
    www.southernbelleintraining.com

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  2. Girl that is so crazy! I'm glad you're feeling better. I've never been through a major illness like that, but some of my close friends have and it's so hard on them. It's also so hard to get back into the swing of everyday life when you're dealing with pain.

    Sending you much love !! xx

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  3. First of all, wow-you are such a strong girl! I will be sending prayers, positivity, and good vibes your way as you continue finding out what medications are the best for you! Growing up, both of my parents had migraines on a consistent basis (pretty much 5 out of 7 days at least one of them were down with a migraine) and I would not wish that pain on anyone ever.

    xoxo, SS


    www.SouthernAndStyle.com

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  4. You have been through so much! This is crazy! I hope everything gets and stays up from here!

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  5. Oh my goodness, that sounds awful! I can't imagine going through that and being as strong as you...Im so glad you're feeling better and hope it continues. Sending good vibes and love your way!

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  6. I think it is amazing that you are opening up more about your journey living with chronic illnesses. I am SO happy the botox has helped with your migraines, I am sure it is amazing to have that issue under control. I've never had chronic migraines but even a few migraines here and there really make me feel awful so I cannot begin to imagine everything you've been through. You are SO strong & I know your openness is going to help others feel not so alone in their own health journeys <3

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  7. I'm glad that you're feeling better. I think it's great that you're opening up about your journey living with chronic illnesses. I'm so glad that botox injections have already had such a big impact on your migraines!

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  8. I'm so sorry to hear what you've been going through! Thank goodness you're beginning to find a little relief. Taking care of yourself is way more important than keeping up with your blog so good for you for realizing you needed to focus on that first!

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  9. Oh my gosh, I can't even imagine. You are so strong and inspiring and I'm so glad you're opening up about your chronic illnesses. I hope you continue to get better with time. Keeping you in my thoughts.

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  10. Oh my gosh girl, I am so sorry to hear about everything you've been going through! You are so strong for going through all this and still maintaining a positive attitude! I hope you continue to feel better and hopefully there won't be any other issues that flare up :)

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  11. wow, thanks for sharing! i'm glad you're going through this with such a positive outlook, and willing to have conversations about such personal matters <3

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  12. So happy botox is working! I hope things keep getting better. Sending you lots of love and prayers <3

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  13. Thank you so much for sharing this! I've always been hesitant on being too personal on my blog and this post really inspired me. I am sending lots of good vibes your way and I hope you feel better everyday!

    xo // www.thematerialgirl.co

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  14. Oh you are so strong for sharing this! Such an inspirational post, if you don't mind I'll be praying for you! I know how hard it is the have autoimmune diseases!
    Sending prayers and good vibes your way!

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  15. You are so strong. Thank you for opening up and sharing the difficulties you've been facing. I admire your strength in moving forward in spite of your challenges.

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Thank you for taking the time to stop by The Blush Blonde! I love all of your comments and make sure to read each one! xoxo

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