Another week of waiting.

Last Wednesday came and went... and no rehumatologist appointment. I got a call at 7:45am saying she was out sick and I (along with everyone else that day) would have to be rescheduled. I was heartbroken. November 26h at 4:15pm was the next available appointment, but they would give me a call if something sooner opened up. Again my heart sank. 4:15pm?! How was I supposed to fast till then? It's difficult enough to wait till 10:30 (and still till noon when the doc appointment actually ends) to eat.

Then I got a call Thursday afternoon. 10:45am next Wednesday opened up and I took it. I was ecstatic and immediately called my mother to let her know. So that is the new update, Rheumatologist appointment next Wednesday (the 14th) at 10:45 am.

Lately I've been going through a period of contemplation. It's difficult to describe I suppose. When I got my diagnosis I started reading everything I could ravenously. Pouring information into my brain as fast as I could to be prepared for future doctor appointments. And then it all stopped. I had an information overload and it was making me depressed, so I stopped reading.

Occasionally (ok well really daily) I look at things online, but it's not the intense studying kind I had been doing. It's more... people's blogs, tumblr, facebook etc. I think it's helping me cope. It lets me know I'm not the other person out there with crazy symptoms. I know people (and know of people) who are chronically ill as well, but I haven't spoken to them. I don't know how to approach the subject and not offend. I still haven't spoken with my grandmother since she found out my diagnosis (from my mother) even though she has all of what I have and more. I also know of someone who I've known for a few years, but she's hurting so so so much more than I am, and is much worse off, that I don't know what to say. I've always wanted to reach out to her, be friends with her, but I just don't know how. And it isn't because she is also chronically ill, but because she seems like a beautiful and intelligent person.

I don't know... I've always been socially awkward, even since childhood I had few friends. I have difficulty holding onto friends as well, and I've never really known why. I think it's why I don't bother to try anymore. I mean, I've tried making new friends, but something goes wrong at some point. Bleh.

But! The whole point to start this topic, is because I wanted to promote a tumblr page. http://chronicillnesscat.tumblr.com is run by someone who has Fibromyalgia, DLE, SLE, POTS, Adjustment Disorder, and OCPD. They totally know how it is to have a chronic illness, the pain, the doctors, meds, etc to deal with. I've been reading through the meme posts for a couple of days now (not constantly, just when I have time!) and am loving it. It really does make me smile and helps me cope with it. I know I'm only just starting my journey and I'm not yet to the point many (with chronic illness) are, but I feel I can be prepared for that now and laugh about it. 

I supposed some would think it's kinda sad, that maybe I'm constantly reminding myself of my condition, but the truth is I already am constantly reminded of it. Every time I pick up a full glass of water, or have to carry the large dinner plate I'm reminded of my muscle weakness. Every time I need to go to the bathroom or take a shower I am reminded of the pain. Every time I wake up I am reminded of the stiff and swollen joints. It is very rare I forget my illness, so I find comfort when I can laugh about it. I need it. So, if any of you are chronically ill or have a close family member or friend who is, I really suggest you check out that tumblr. Who knows, it may help you understand something you never did before. 

Almost forgot! A picture for this week's post! I got a pill organizer and bin to hold my most often used things this last week. It's a perfect size for holding all those things (and now more) you saw on top of my computer last week. The meds/herbs in it are currently ones that I refill the weekly organizer with, and ones I take on an as need basis. Once I have more as-need meds I will move the weekly ones to the cabinet. The other items are my pill cutter, tums, pain cream, some lotion, my planner, and some napkins. No more knocking bottles off of the computer!

I really need a real camera. -____-

That's it for now!
xoxo -Carrowyn

Another visit on the horizon

First and foremost, I would like to apologize if little or none of this makes any sense. I will be talking about blood tests my doctor ordered (which I'll go into more detail about down the road) but I also have a general issue with concentration. My thoughts are constantly scattered and I tend to just sit down and write what comes to mind, as it comes to mind, and in a way as if I was just standing there speaking. This may lead to posts that don't have a very good flow to them and I apologize. Go go brain fog! =)

To start off, last Monday (Oct 29th) I had my follow up appointment with my doctor and we went over my labs. She even printed them out for me to take home to keep for my records. Now I don't know what makes an awesome doctor, but that is definitely on my list. 

I did test positive on the ANA (anti-nuclear antibodies) test for lupus and my CRP (c-reactive protein) and ESR (erythrocyte sedimentation rate) also confirmed the diagnosis as well. I also had an elevated white blood cell count, lowered red blood cell count, vitamin D deficiency, possible liver damage, and I am borderline diabetic. What a doozy huh? The rheumatologist will be able to tell me in what more ways I am falling apart as well. More blood to be drawn, more tests to do. Blech. While we're on the topic...


This Wednesday (Nov 7th) I have my first rheumy appointment. At first I was more apprehensive about going to the rheumatologist, but now... I don't know... it doesn't seem so bad? I am worried I'll have to take my clothes off so she can see my joints and swelling, but hopefully not. I also know she's also gonna say something about my weight. I swear, doctors expect you to walk in the next time you see them and have dropped 100lbs. *eyeroll* 

Today we are planning on returning to the gym. Walking, that is my goal. Just an hour of walking a day at first. I've been told I need to not push myself too much because I can cause more harm than good. I just need to get my body and joints moving so things don't get any worse and hopefully I can lose some weight. We actually came to the conclusion that I have stunted my metabolism by not eating ever and so my body holds onto everything. Sigh! I was told I need to be eating frequent and small meals, but I'm just not hungry. I don't know what to do. We have healthy options in the house, just not ever hungry to eat them.

Noticed that "we" huh? Well, as many know, a year and a half ago the most wonderful man moved to Texas and we've been inseparable since. We recently celebrated our three year anniversary and I wouldn't change a thing. He has been there for me through everything. My good days, my bad, and my really bad and everything inbetween. For now we'll call him "M".

M is a different man than most. We understand eachother in every way possible, and with him around it's nearly impossible to have a bad day. He knows just what to do to make me smile and laugh and he understands if I'm just not feeling well. He's beyond patient with me, saint-like pretty much. I don't know anyone else who has the amount of patience he has, specially for someone like me who can be... trying! Ha. I'm stubborn, and impatient, and a myriad of other things, but he still loves me. *dreamy sigh* I think there is someone out there for everyone, regardless of race, gender, or miles between them, and I hope everyone can find their special someone.

I think that is all for now, more will come after my rheumy appointment since I am sure that will be full of new anxieties and information. I also hope to start a video blog eventually, if I can find the time for it between the deep house cleaning that will be happening over the next few weeks in preparation for holidays and company coming over. I will leave you with my ever-growing pile of pill bottles, my vit-d prescription is missing though, it's downstairs for some reason. Hrm...

(Excuse the bluryness - I'll find a real camera instead of my phone one soon enough) From left to right - Tums, Tylenol Precise, 500mg Naproxen, Omeprazole Magnesium (Prilosec), Cyclobenzaprine Hydrochloride (muscle relaxant), Medicated Chapstick (I usually use burts bees, but I'm having very very dry lips and nose recently so have been using that in the short term since nothing else was working), Ibuprofen (Advil), and Pamprin. 50,000 IU of Vitamin D (taken once a week) not pictured. Plushie Link is being a creeper back there too - what a weirdo.

A blog reboot and a diagnosis.

Well, here we are, a few years later and this blog is still floating around. I thought about making a new one, a new title, a fresh start... but I liked the name too much! Perhaps it'll be an encouragement to keep this going. Though, I think I have plenty of encouragement lately to write my thoughts down. I feel I need an outlet to just get everything down and out in the open, so I am not constantly bugging those around me. I know my family cares for me greatly, and wants to help me during this time of difficulty, but I hate to burden them constantly with my problems. They have problems of their own too, and I respect that. So here I am.

My current state of health is an odd one. I am in constant pain, yet I push through my day just like I always have because it is what has been expected of me. I feel by ignoring my illness for so long, and continuing to do the cooking, cleaning, shopping, laundry etc etc, I've set a precedent. Even on days I wanted to stay in bed because it hurt so badly in every fiber of my body, I still had obligations. Some of those obligations I put for myself, and I did not mind sticking to them. So please, do not worry about those obligations that I enjoy doing.

But some obligations...I did not choose. When my mother left to do her "nut out I'm in love with my boss thing"... I was left to do everything that she helped with or did outright. This included taking my father to work and picking him up everyday since he lost his license. An hour in the morning(in rush hour traffic), half an hour in the evening, the pain in my hips some days indescribable. It also included menu planning, grocery shopping, cooking all the meals, doing all of the laundry, all of the cleaning, and making sure the animals all had food and water each day. It exhausted me because of the state of the house it was left in before I picked up with it. My parents are slobs. I wasn't able to just pick up hitting the highlights on a weekly basis, but rather having to tackle nasty jobs just so I wouldn't lose my mind. This worsened my condition, but I never said anything. I felt if I said it hurt too much, that I needed to spend the day in bed, that I'd have people upset or mad at me. Or tell me I was lazy. So I plowed on.

Plowing on day to day has led me to now. Last Monday, October 15th, I saw a doctor for the first time in 4 1/2 years. It was one of the worst experiences in terms of emotional distress and blood pressure spiking I think I've ever had. All I could do while sitting in the waiting room was try to remember everything I wanted to say, all of the symptoms, what bothered me the most, and how I was going to make my case so the doc didn't think I was just fat, lazy, and crazy. I needed this validation of how horrible I feel every day of my life for several years now.

She believed me. She listened to me. She even came up and started pressing on certain points. My first reaction was to take it with a stone face like I always did whenever someone touched or pressed on one of my many tender and painful spots. But I had to tell myself to show the pain. Let the doctor know how much it hurt. I almost didn't know what to do. I didn't know how to show the pain, but I seemed to communicate it to her well enough. She said I was hurting on nearly all of the fibro points, she was going to refer me to a rheumatologist. I was ecstatic... yet so sad at the same time. All of this could have been avoided if I'd just gone to the doctor when I started feeling terrible. Maybe I wouldn't feel so badly now if I had gotten the help then. But I couldn't change the past, only the future. Then came the blood draw... I don't want to go over it again. I don't do needles going into a vein well at all and am still recovering from the panic and pain brought on from the experience. Sadly, it was the best blood draw I've done since I was a child.

The call came the Wednesday after (10/17) and it brought the first word of great and terrible news. My blood tests had come back. Very low Vitamin D, anemia, my white blood cell count was a little elevated, my sugars were borderline diabetic. And the final result. I tested positive for lupus. I was going to follow in my grandmother's footsteps of a life of incurable pain. She has lupus and a myriad of other illnesses, some I may have later in life as well. I don't want to live in the same pain and difficulty she lives in every day.

The nurse said the rheumatologist will give me a call to schedule my appointment, and asks me what pharmacy to send my Vitamin D prescription to. It was a blur. I was in walmart at the time, I had to hold it together. I finished my shopping, came home to put the groceries away, and I never broke down. I still haven't. Even while I have been reading forums and posts online about lupus, how it can be the great imitator, I haven't broken down yet. Maybe I don't believe it. So many others didn't have their diagnosis for weeks, months, years. How come I got one within 2 days? How was it so easy? "It can't be lupus" is something I think my subconscious is currently telling me. Or what if it's worse? Wait to have the breakdown if it's worse. What about lupoid sclerosis? What if it's just fibro? What was in the blood tests that led her to believe I have it? I have to wait to have my breakdown after the rheumy appointment. I think this is what I've decided. Wait to see what he says, then decide when to cry.

My blood pressure monitor, $40, wrist cuff.

Since Monday, my diet has been changing. I've been taking my blood pressure at odd times of the day and recording them for my doc, and I've been doing as much reading as possible to be ready for my next appointment. I want to be able to absorb all of the information I will be getting soon and have a real conversation with the doctors so I can get the treatment I need.

 --Sigh--

I know this post got long... so very long. And a bit ranty at points. But if you're still reading, I thank you. I promise my next post will be a bit lighter. I will continue to do posts on my diagnosis and keep you guys updated, but I will also have posts on just everyday life things. Tips, crafts, recipes, etc. I hope to record my life here and I thank all of those who will join in on this journey with me.

xoxo
Carrowyn