Typically, I am a very private person. I do not open up easily. I am very guarded and cautious and keep the details of my personal life hidden, only to be trusted with very few. So in order for me to come out here and share this with all of you, has taken careful consideration, laced with doubt and anxiety on my part. I decided to write about this for a couple of reasons. One, a good friend of mine of encouraged me to keep a journal and write about my experience with this and how I’m feeling because it will most likely help me get through this, emotionally. I know the effects of keeping things bottled up inside and letting it eat away at you. And something of this magnitude is already doing its fair share of damage to my body and psyche; so why add to that? And second, I know each person that experiences something like this; their battle is not the same as someone else’s. Of course there are similarities, but not all symptoms and struggles are identical. So if I can come out here and share my story, maybe in turn, I’ll be helping someone else. I’m not sharing this for sympathy. I’m sharing this for awareness, for support, and for hope. And if I can touch just one person, and let them know that they’re not alone in this and they don’t have to struggle in silence, and NO, they are NOT crazy, even though some days you do question your own sanity, but what they are feeling and experiencing is very real. Then I know in the very least, I’ve done something to hopefully help someone else…..
I have been diagnosed with Lupus. Possibly Vasculitis; but my Rheumatologist feels that Lupus is most likely what is at play here. I’ll get to that later. But first, I’ll give you a small glimpse into how this all came about.
Honestly, I can’t really pinpoint a time when my symptoms first started. I noticed some strange things happening sometime in the summer of 2013. But my symptoms weren’t bad enough that I truly thought something was wrong with me. I started to get these weird rashes that would come and go, and on different parts of my body. My sensitivity to the sun seemed to be increasing as well. I’m naturally a very fair skinned person, and I’ve always had to be careful in the sun, but that summer, it did seem like I was burning quicker, and just getting more uncomfortable. I chalked it up to my estrogen. (Although, I have been on it since 2008 due to a radical hysterectomy…and why would I be bothered by it now?) Needless to say, I brushed it off and ignored it. Fall was coming soon anyways…
Temperatures start dropping, the skies get darker, holidays are upon us, and snow is on its way! Fall and winter have always been my favorite time of year; but this time, something else was changing too. My body started to hurt. It was odd. It would come and go. But I noticed it particularly in the mornings and at night. When I would get up and my feet would hit the floor, I could hardly walk. I was limping around. It wasn’t like this every day, but more days than not. I found myself taking ibuprofen, a lot! Practically on a daily basis. But I also had a lot going on my life. I had started writing Raven’s Innocence, and spent a lot of time in the evenings doing that. Also, with my long commute to Kansas City and back for work, I assumed that maybe all those hours driving, was finally catching up to me. At that time, I had been driving 86 miles one way, going on two years I believe. Combine that with the extreme stress I was under due to personal reasons, no wonder everything hurt and I felt like I was falling apart. But I kept it to myself, didn’t complain, and life went on.
Sometime during that winter I started to have nose bleeds. Okay, not get gross here, but I discovered there was a lesion that had formed inside my nose along the nasal septum. Of course when I saw it, I was like “What in the Hell is that!” Then the more I thought about it, I wondered if it was something allergy related. In the fall and spring my allergies are terrible. I often times end up with sinus infections. I shrugged it off, but kept an eye on it.
As the months followed, I focused on getting my first book written, edited, and published. I still felt like I had been hit by a Mack truck some days, but you know, it was just “stress.” And the rashes were coming and going. By then I had switched to every type of perfume free, gentle, cleanser and lotion for sensitive skin, thinking maybe I was allergic to literally everything in this world that I came in contact with. Did the rashes improve any? Nope. But again, I ignored it. Finally that summer, Raven’s Innocence launched and I dove into writing my next book. Ignoring what was happening to my body. “Ain’t nobody got time for that.”
Fast forward quite a few months, and I notice that the lesion inside my nose is getting significantly worse. I go ahead and see my doctor and she refers me to an ENT, telling me that does not look right and I need to be seen by a specialist. Of course then, I freak out thinking I have nasal cancer. It was looking pretty gross. And me taking to the internet to research all this, didn’t help my anxiety.
Now, by this time it’s fall again and I get the referral to the ENT, but of course there is a couple of months wait being a new patient and all. So in the meantime, before that appointment, I’ll fill you in on other weird symptoms that started to occur. These symptoms would come and go. And I could not pinpoint anything that necessarily triggered them. And as a busy full time working mother, with a family, and also a writer on the side, I kept pushing these symptoms aside. I would find excuses for them. Or just ignore them. I was feeling like Hell all the time, but I kept it to myself. I was “Fine”. But here are the things I was experiencing, in no particular order:
*Body aches and pains. Sometimes, my legs hurt so bad, they felt like they could splinter. The same for my back and arms even.
*I developed a strange cough. My eyes were extremely dry and red at times. My nose would run a lot. These came and went, so I blamed them on allergies.
*Some nights I would feel like I was fighting off the flu. Everything hurt so badly from head to toe. I would run low grade fevers. I could have sworn I was coming down with something. But then I would wake up the next day, and the fever was gone. And I barely hurt.
*Swollen legs, feet, and hands.
*My hands and feet would get so cold, like ice at times. My fingertips would almost look blue. I later found out that this was Raynaud’s.
*The rashes continued but when they came, they kept getting worse, especially the ones on my chest and neck. They almost looked like big lesions at times. I kept brushing it as being an allergic reaction to something. I didn’t know what though.
*I even had what is known as the ‘Butterfly Rash’ on my face, but I didn’t know what that was at the time or what it could possibly mean. And that particular rash only made an appearance a couple of times.
*Severe irritability (but when you’re in chronic pain all the time, irritability just starts to take over)
*Some days I felt like I was just in a mental fog that I could not break free from.
*That next February of 2015 I actually got the flu. And it was so bad! I missed over two weeks of work. I had to go on short term disability. I was at the doctor’s office multiple times during those two weeks. She couldn’t believe that I could not fight it off. She said it was one of the worse cases she had even seen, especially in someone my age. I was only 35 and honestly thought at times, it was going to kill me. And as sick and miserable as I was, I would have welcomed it! Looking back, my doctor thinks the Lupus was in full swing and I just couldn’t get rid of the infection. I had never in my life been so sick from something. I’ll spare you the details of that experience, but I never want that shit again!
Every symptom I had, I could give you an excuse for too. I just kept it all to myself, suffered through it, and kept on going.
It’s almost spring time and Yay!!!!! It is FINALLY time to see the ENT. Fortunately, seeing the ENT quickly puts my fears at ease. He did some testing and gave me some medicine for the lesion and scheduled a few more follow up visits. He also instructed me to stop using any type of nasal allergy medicine because that can cause lesions and sores to form inside the nasal cavity. As I continued to see him, the lesion got better, but not completely better like he had hoped. It was not going away.
So a few more things between my first initial appointment with the ENT, and the final appointment that led me into digging deeper to find out what is wrong with me…. All the symptoms I listed above, I kept experiencing. And that summer (just this past summer of 2015) I noticed that rashes were getting worse and I was finding that when I outside in the sun for literally any length of time, I would get a rash that would come up within minutes on any part of my skin that was exposed. Even with sunscreen. My oldest daughter is on the swim team. So you can only imagine what that was doing to me. And something new was starting; I could hardly tolerate the sun visually. Going outside literally hurt my eyes. It was painful and my eyes would water. My doctor told me it was possible I was actually developing a sun allergy and just stay out of it. I hate the outdoors anyway, so I was good with that. The only problem was, sometimes, when I was inside, if the lights were too bright, I was starting to experience the same thing…
Finally it’s October, and I’m going in for yet another follow up with the ENT because this lesion is not completely going away. Oddly enough though, the week I am scheduled to see him, I am once again feeling really crummy. But this time I’m having aches and pains in my left side in both the upper and lower quadrants. I’m worried I have a kidney or pancreas issue. So I call my regular doctor and find out she has left. Moved away…. And I have to see someone new. Freaking great…. Little did I know, this new doctor was going to exactly who I needed.
So I see the ENT on a Friday and he sits me down to explain that he thinks there is more to this lesion than what he originally thought and it was blanching and getting bigger and this is a major concern. He asked me if I or anyone in my family had ever been diagnosed with an auto-immune disorder such as Wagener’s. My answer is No. Then he asked me questions about whether or not I’ve experienced certain symptoms, and he goes through a list. Those questions opened up Pandora’s Box. As our conversation progressed, I opened up about everything I had been feeling. And it just so happened I had this appointment the following Monday with my new doctor. The ENT told me he was going to send everything he had on me to the new doctor and that I needed to tell her everything I had shared with him and that I probably needed to see a Rheumatologist.
That Monday morning, I go to see my new doctor. And I must say, I LOVE her! She is amazing! She took the time to really sit down and talk with me. After going over everything, she looked at me and said “Nicky, you are literally a text book case for someone who has Lupus.” She ordered lab work, and also sent me for x-rays of my upper body to look at my lungs and kidneys and etc. Then she scheduled a follow up appointment for the next week to go over all the results.
Also, on a side note, and I won’t dive too deep into this. But after discussing with her my mother’s history and her sudden death at the young age of 43; (And also talking to other relatives about my mother’s health concerns) my doctor thinks it’s possible my mother also had an autoimmune disease, which was left untreated because every time she went to the doctor, they brushed her off and eventually thought she was just a hypochondriac. No one ran the specific tests to see if she did in fact have something such as an autoimmune disease. Because of this, she died very young and maybe she would be with us today if someone had just taken the time to listen to her. This is just speculation, and what’s done is done, there is no bringing her back. But it’s also important to know this is a possibility and why I should not ignore my symptoms any longer.
The following week I went to my follow up appointment and that is when my doctor told me that every test she ran, except for one, all supported my symptoms of Lupus and she wanted me to see a Rheumatologist. She told me I was too young to feel this way and that all my symptoms were not normal and she promised me she was going make sure I get the help I needed. Looking back at the timeline of events and how everything happened the way that it did, I know it all fell into place the way it was supposed to.
This next part isn’t very important, but she did give me a referral to a Rheumatologist and I was able to see him in November. Long story short, he had terrible bedside manners. He spent maybe 15 minutes with me tops. He didn’t ask me about symptoms or history or anything. Just looked over my previous labs, ordered a CT Scan, and literally shook my hand and said “I hope you don’t have to see me again.” I walked out of there Pissed as Hell, thinking “Believe me, I won’t be seeing you again you Asshole.”
The next morning I called my doctor extremely upset over the appointment with that Rheumatologist and she had me come back in because I needed something to help get me through this hump. The holidays were in full swing and my body was in full swing of what felt like, it was trying to kill me. My doctor had hoped the Rheumatologist was going to prescribed me something, and she was also upset and disappointed with his bedside manner and lack of concern. She gave a prescription for Prednisone and told me start taking it immediately after I had my CT Scan, which was a few days away. That day, she also got to witness what she called Raynaud’s Phenomenon. My hands were like ice and my fingertips were blue. Also, I was so swollen, like a fat tick. She gave me prescription for a water pill too. Set me up with a new Rheumatologist, and scheduled another follow up appointment.
Unfortunately, being a new patient, I could not see the new Rheumatologist until February 15th. So my doctor was trying to get me some relief, at least through the holidays because I was so miserable. Luckily my CT Scan came back, and it was clear. The reason it was ordered was to make sure I did not have any more lesions forming anywhere inside my body, especially the sinuses and brain. My lab work did however give the same test results as the previous ones; except the inflammation was even higher this time. Everything was just getting worse. I couldn’t suffer in silence anymore either. My symptoms were becoming real issues that were affecting my day to day to living. I ended up taking the Prednisone the whole month of December, and I hadn’t felt that great is so long! My aches and pains went away. I could walk without limping. I was clear headed. I was springing out of bed like a pop tart out of a toaster. I felt AMAZING! The water pill I was on pulled 4 pounds of water off my body in the first 4 days! My blood pressure dropped. I have never felt better.
Christmas came and went and since prednisone is a drug that doctors prefer you not to stay on for very long, I had to start the weaning the process. And as soon as my dose dropped low enough, BAM! Here comes all the symptoms I had previously experienced and I was quickly descending back into my own personal hell. My appointment with the new Rheumatologist could not get here fast enough!
Finally, just this last Monday, the 15th, I sat down with my new Rheumatologist and was able to get some answers. She spent 30-45 minutes with me going over everything I have been experiencing. She told me that I had either Lupus or Vasculitis, but she was leaning more towards Lupus because of the photosensitivity I am experiencing. Either way, she said she would treat them both the same way. She said she was going to start building my patient file. She explained to me that every time I have labs ran, my markers can change depending on symptoms and flare ups. She said autoimmune disorders, such as these, are complex and things constantly change. She also believes it’s possible my mother had Lupus or Vasculitis and it killed her. She explained to me the different treatment options and gave me information on the one she wanted to start me with. She told me to stay off the internet because all that will do is scare me. So what did I do? I went home that night and spent all night researching them, the medication she prescribed me, and ultimately have scared myself shitless!
This new Rheumatologist is something I will stick with. She was kind, caring, knowledgeable, and very informative. She took the time to answer my questions. Also, the timing was good because I had another really bad rash on my chest and neck. She was able to see the lesions first hand and she said the rash is something she sees often in patients with Lupus. She also asked me if I sat in an office that used fluorescent lighting. I do. She told me that fluorescent lights give off just enough UV light that they can also cause a photosensitive reaction, and with it being winter and I haven’t been in any sunlight, that would explain the rashes I keep getting. She ordered some more lab work and scheduled my next appointment with her; which is in May. In the meantime, she will call me when my next set of labs comes in. And I am supposed to call her if I have any problems with the medication she is prescribing me.
I took my first dose of Methotrexate yesterday. In another blog entry, I’ll describe what that was like. I’m still feeling the effects of it today. Methotrexate is used to treat certain types of cancers as well as autoimmune diseases. You must take it exactly as prescribed. The side effects can also vary depending on the person taking it. Not everyone experiences the same effects. And once again, after reading about all the scary side effects on the internet, I had to be reassured that the risks outweigh the alternative. I know that these autoimmune disorders, if left untreated, can eventually kill you. I also know that everyone can have different symptoms and degrees of severity. No two cases are exactly identical to each other.
I am to take the Methotrexate on the same day once a week. I am starting by taking 4 tablets, 2.5mg each, for the first two weeks. After that, I will take 6 tablets at a time, and continue that until I see the Rheumatologist again in May. Then it will be determined if my dose needs to be increased. She told me that it can take a month before I start to feel or see a difference at all in my symptoms, but to not get discouraged. She also gave me a prescription for Folic Acid, which I must take daily. This helps with potential side effects, such as hair loss. (Yeah, I seriously came unglued over that one. But the smaller the dose of MXT you’re on, the less likely you are to have this happen. But it’s important to take the Folic Acid every day.)
I’m also taking a multi vitamin, fish oil, calcium, and extra levels of vitamin D, all in hopes to strengthen my immune system and help manage this. With the MXT, I have to be extra careful being around people who are sick. My immune system is being completely suppressed now, and I am more susceptible to infection and will have very little capability of fighting things off on my own. There are lots of things I have to be more careful of now, but I won’t bore you with those details.
I do want to personally thank those few that knew I was going through this, and have been so supportive of me. You know who you are. I appreciate the support, the insight, the prayers, and the love. I know that I am fortunate to have found a doctor and a Rheumatologist that took the time to listen to what I had to say and made me realize that no I’m not crazy, something is WRONG with me, but that there are options out there and I can fight my way through this. There is no cure. And even with treatment, I’ll have flare ups. I’ll have some bad days, but they won’t be most days, like they have been. I also know that what I’m experiencing isn’t as bad as it could be. People out there are going through far worse things than I am. But what I am experiencing is very real and I have a lot to wrap my head around and work through. But in the end, I’m going to be okay. My faith in God will be one of my biggest rocks. I got this!
Going forward, I’ll blog at different times my experiences with this. I should have started before now, but I kept it all inside because I really was unsure of what was happening to me. I’ve spent the few months, as this progressed, living in a state of pain that has no escape. I have truly been able to grasp the hurt and depression that people go through that drives them to finally want to end it all because being gone is much easier than living. It’s the kind of pain that makes your body feel like it’s splintering from the inside out. Eventually it Fucks with your mind because you’ve lost all ability to cope. I became miserable, withdrawn, and sick of it all. But let me clarify, No I would not have taken my own life as an escape. I’m just stating that I could empathize with people who felt that was their only option with no end in sight. I felt like I was stuck in a well and could not claw my way out. But now, I finally see a light at the end of the tunnel. I finally have some hope. I finally will get my life back. But most important of all, hopefully my girls won’t have to say goodbye to me so early, like I did my own mom….