One of “Those People”

Here it is. A week after starting the diuretic… and I feel AMAZING!

It took two days before I really noticed any big changes. Then all of a sudden my feet and legs just didn’t hurt any more. So far I haven’t had any additional urges to have to pee. I just feel better. So now I just don’t care that I am taking a set of pills – the Lasix and the potassium – to off set the side effects of another medicine – the prednisone.

I was pretty upset about that step. It was a whole new reality that I just never saw myself being a part of. A side of being sick that I managed to avoid for two years. It was a step that I kind of felt that if I avoided I wasn’t as sick as other people were. I wasn’t one of “those people.” Now though, now I have this whole other perspective. It is all about survival. It isn’t a loss. It isn’t making you less of anything or more of anything. It is just that you need to do what you need to do to make your life survivable. Better than survivable even because you can get your life back. I went from being in so much pain that I couldn’t put shoes on or sleep well because the pain was so intense and so constant – to being pain free. Let me say that again – I am PAIN FREE! Who cares if it makes me one of “those people” or if it makes me more or less of anything!? I can go for walks. I can sleep. I can function again without it being something I have to survive. I am living and enjoying instead.

Don’t get caught up on any hang ups you have had from before. Any ideas or ideals you had before this became your life. You were naive. You didn’t know better. Give yourself a break and move past it. You need to let yourself do whatever you need to do to make life happen for you. It’s alright. I promise it is.


Taking Medication to Balance other Medication

This is a new step. A big one I feel like. I am now officially taking a medication solely to balance the side effects of another medication. Welcome to being a Spoonie. I hate taking pills. Putting anything in my body but I better get over it because the only reason I am alive right now is thanks to taking medication every day. Prednisone; life saver and soul sucker.

I have been in so much pain the past two weeks. I could barely function. My feet hurt, like they have been for months, but significantly worse. It went from sometimes I had foot aches and pain to all the time. There was never a moment where they didn’t hurt and it wasn’t just aches any more. It was now also sharp stabbing pains. The pain had also moved from just my feet and ankles to up to my knees. I was miserable. The pain made it hard to sleep. So I was also always tired. Napping didn’t really make up the difference. It compounds on top of itself. Every day it gets worse. It hurt to put shoes on. To walk even barefoot.

The challenge is to figure out if this is prednisone related or disease related. The only way to be sure: blood work.

We ran labs 3 weeks ago so we weren’t really expecting a big difference. The labs came back with my C-Reactive Protein much lower than it has been in months and my Sedimentation Rate was slightly elevated but still within normal ranges. So, what does this mean? It means… we’re hoping it’s prednisone because that may mean that the medication (Imuran) is working! So my amazing rheumatologist – have I mentioned how awesome he is – prescribed me Lasix, a diuretic, to try and get the water retention in my legs and feet to go down. It will make me have to pee quite a bit more, which makes sense. I won’t mind that at all if it works! Pain is terrible! Does anyone else watch House? No wonder he was so grumpy!

So, here I go. Starting a new phase in my spoonie life. Taking medications to offset the side effects of another medication. Just trying to get through the day.

The Fine Line Between Positive Thinking and Setting Yourself Up for Disaster

Phew long title. Excuse the wordyness… but it is exactly what I am going to talk about here.

For those of you who haven’t been following my blog here is a recap to help you understand – like a “previously on” for your favorite television show: I have been dealing with Wegener’s for nearly 22 months. I am not in remission. I have not yet found a treatment that works. We tried Rituximab 3 times and now we are trying Imuran… GO!

After the second Ruximab infusion I wanted it to work SO badly. I can’t even begin to tell you. We were weaning off the prednisone and no, I didn’t feel awesome. One of the amazingly fun facts (please feel the sarcasm dripping from every word) is that when you are weaning off of it your side effects can be either exactly like very high doses OR like your disease. YAY! So how exactly are we supposed to know how it’s going? Not sure. I wasn’t feeling awesome but I was managing. I didn’t feel sick the same way have I had previously when I first got sick or when I had my flare up. So we just kept slowly lowering the dosage. I had started to let myself fantasize about getting “better” and being in remission. I just knew it was right there. I was going to be fine. One year and BAM – got my life back. Of course I was completely WRONG. I started coughing up blood again.

I was scared and I was devastated. All that day dreaming about what I could do as soon as I got into remission went away. I wasn’t about to get better. In fact I was almost as sick as when we started this process a year before. It broke my heart. I had let myself think about trips, getting back to work full time, taking more units at school, playing with my nephew at the park and the big one looming over any 30+ year old woman who hasn’t had children but wants to… being able to have children soon. But no… no I shouldn’t have let myself go there. I shouldn’t have thought it. Now all I could think was how much I wouldn’t get any of those things. We wouldn’t be planning a trip to Greece or Ireland because we would get there and I would be so worn out from travelling I would spend the entire time in bed. Work will have to wait. I won’t take on clients because I don’t want to have to disappoint them and lose them. I’ve worked too hard to lose my reputation. School will have to stay slow and steady. I can’t take on any more. I just can’t. If my eye strain doesn’t get better I can’t do more. I have to feel that stabbing pain in my heart when my nephew asks me if I’m better enough to take him on a bike ride or if I can take him to play in the ocean. There will be no babies in my near future. It will be at least another year away; at least.

So we did the Rituximab one more time… and two weeks later I couldn’t function. Not a great way to spend Christmas. I never felt great through the three months post treatment so it was not a surprise when my rheumatologist said that it looked like Rituximab never worked for me. It was time to try something else. Even though I knew this was coming this time I was still so sad and frustrated. We had spent a year and a half on this with no result. I was worse off in some ways thanks to the prednisone. There was nothing else to do though. Start the next step and hope it worked. Slowly because everything in this process is slow we went up to the full dose and we waited, again. My last blood work came back confusing. One number had dropped significantly and the other went up just slightly.

I find myself back in that place again. Do I let myself get into the positive thinking mode. Start visualizing it working and what my life will be like when it does? Walks through the mist, running on the beach, working and loving it instead of dreading it and maybe even babies. Is it safe to really let myself believe I can have that? It was so hard a year ago when things fell apart. I’m not sure how I would deal with the recovery process again. Pulling myself out of my visualized life. Putting off my hopes and dreams. Having to face the reality that some of them may never come true. Where is the line that let’s you hope and pray and maybe even believe that it will work that won’t shatter you when it doesn’t come to fruition? How do you figure out where to be so that you don’t feel like you just put your dog to sleep? Like you are losing more and more of yourself every day. How do you hope for the best but then deal with the worst when it becomes reality? I’m not really sure that you can. I’m not sure that it is a reality. You can’t really live half in the light and half in the dark. The depression and devastation that is part of the treatment not working may be only 3 weeks away for me. My doctor told me that I should really be positive. That the drop in my C-Reactive number and small increase in Sedimentation Rate (which is still in the normal range, barely.) is actually a good sign. To not let myself feel like the treatment isn’t working. We’re on the right path. I trust him. He wouldn’t tell me that if there wasn’t truth in it. Once I open that door to hope and belief it is very hard to have it slammed shut again.

Disaster may be eminent. So I am not letting myself get too hopeful or too excited. I am remaining in my cautiously optimistic place. The one where it’s more like, I’ll believe it when I see it… but I can analytically understand that it is a possibility. I don’t believe yet. I can’t find faith. My hope is hiding because I need to be able to survive.

Bitter Bitter Bitter

Warning, rant ahead…


I am feeling SO angry recently. So many people didn’t do things right. They did drugs, drank too much, hurt people, abused people, manipulated people, eat horrible food all the time, they slept around and accidentally got pregnant… WHATEVER and they’re fine! Better than fine! They can have children. They can run and hike. They can read – although most people choose not to… They can work a full day. They can cough up allergy crap and not have to check it for blood. They can sit at a table or a desk and not feel their feet slowly get more painful. They can get too hot and not think – crap, am I sick again?

I did EVERYTHING right. I rarely drank. I never did any kind of drug, ever. I never smoked anything… not even a Clinton, “I did not inhale” version. I have always eaten very healthy. I kept my body in good to great shape. I took care of my nephew when someone needed to raise him. I did it ALL. I did EVERY SINGLE THING that they say to do to live a long healthy life… and guess what – I am sick sick sick sick sick… I am FOREVER sick. Even if I get this stupid disease into remission it WILL come back. The average for Vasculitis is 2 years if you aren’t on ongoing therapies. WITH the therapies I am going to be forever susceptible to OTHER diseases and infections. Thank you immunosuppressents. I will forever have to do blood work to make sure that some infection or disease does not kill me. I may never be able to have children. I may never get all the way better. I may have my nose cave in. I may lose my lung capacity. I may have kidney failure. I may have my throat close up on me. I may DIE. It isn’t like it is for most people with the whole, “Seize the Day” attitude. Anything can happen blah, blah, blah… I know this. I know because Daddy went to work and NEVER CAME HOME. I get it… and now… now I’m living it forever. Forever I have to wonder if any change in my body is me getting sick. What if I do manage to get pregnant and then have to choose between saving my life and putting my child’s life in danger… seriously, what if!?

I did it all the way you should… and I am so angry at everyone who chooses not to and takes for granted what they have. That just don’t care and have said, whatever happens happens… because NOTHING IS HAPPENING TO THEM! Why isn’t crap happening to those people? The people who don’t take the time and effort to care? To make the right choices? Seriously, why do they get a pass and not me?

Accepting Reality

There are two medium size packing boxes sitting in my hallway. Currently they are empty. My goal is to fill them up today. Why you ask… excellent question! It is time for me to accept reality. There is absolutely no way in any form of any reality that I will be able to wear 90% of what is in my closet before we are going to move in 10 months. None. I have not given up hope that I will SOMEDAY wear these clothes again. We will find a treatment that works. I WILL get off this damn prednisone. Really, I will. The harsh reality is that even if this treatment works RIGHT NOW and I could start tapering off the prednisone tomorrow I would not be to the point I could lose weight before May when we plan on moving. Actually, I will probably put on more weight before then. Again, accepting reality.

We have a relatively small apartment. It’s perfect for the two of us. For what we need right now. Only the fact is we could use the space to store other things. Plus, maybe it will be less depressing to not look at all of my favorite clothes that I can’t wear. I haven’t been able to wear for over a year and a half. I will have to pack them eventually anyway and they are not going to be touched, just like they have not been touched in the year we have lived here, before we leave.

I still cringe and want to curl up in a ball and cry when I actually see myself. Sometimes I literally don’t recognize myself. It’s bizarre. As long as I avoid mirrors I have accepted that I am this blob of a person. This totally not myself person. This person that is literally double the person I have always been. This person who is now covered in stretch marks because my body can’t keep up with the weight it insists on putting on. This person with a double chin. Whose skin hurts because I can literally feel the new stretch marks coming.  In accepting this version of myself I accept that all my clothes do not and will not fit… not for a year or so at least. Probably closer to two years. It’s just how it is going to be.

So today I am packing boxes. Tucking away part of who I am. No, part of who I was. It’s time to take the next step to accepting my reality. This is my reality.

Prednisone and Your Menstrual Cycle

Okay men… obviously this post is not for you. I am going to be pretty honest here. So if it makes you uncomfortable – remember, you were very clearly warned.



Ladies, we have so much fun with our reproductive cycle don’t we? From the time we start puberty, to when we actually start our menstrual cycle… and then for the rest of our lives. If you’re lucky you can manage everything with a few pain killers and some birth control. There are supplements you can take like Dong Quai etc that help as well. Any major stress can alter your cycle and cause issues. When Daddy died I didn’t have my period for over 4 months. Then I had one every 2 weeks for the next 2 months. My doctor said it was normal with what I was going through. Awesome!

That was nothing compared to what being on high doses of prednisone did to me. I started at 10 mg of prednisone for a month before I got my diagnosis. Then things got really serious. I was on 60 mg of prednisone for 2 months and slowly weaned down over the next several months to 20 mg. By the end of the first month of 60 mg I was having challenges with my cycle. I had started spotting daily. Not heavy amounts as if I was having my period already but very noticeable. All day. Every day. The next thing that happened is that my cycle became erratic. I had been on birth control and continued to be – which is supposed to help regulate your cycle – but the prednisone had a stronger effect. Even with all this spotting – again, every single day – my periods were still a normal flow. Sort of. They were not lighter because I was spotting all the time but the cycle was no longer regulated or normal for me. Now, when I say “normal for me” I mean I usually have a predictable set of occurrences to each day of my 5 day cycle. For me, I usually would: spot the first day, moderate flow the second day, heavy flow that would keep me up every two hours all night the third day, moderate flow the fourth day, lighter flow the fifth day and possibly spotting on a 6th day but not always. That’s just how it has always been for me. With prednisone though, this is not the case. I can have 3-6 heavy flow days. I can have 10 days of moderate flow. Once, when I had been at 25 mg of prednisone when we were first weaning off the 60 mg I had my ENTIRE cycle in about 34 hours. *WARNING here is where I get a little more graphic* I mean I had to change a super tampon with an absorbency rate of 9-12 grams every 30-45 minutes for 34 hours. Yes, you read that correctly. I got ZERO sleep. I could barely move. Pretty much I sat on the couch or lay in bed in pain and discomfort not to mention being in a crazy emotional state. I wanted to cry but I was too tired. I was scared. Really scared. This much blood is just NOT normal. Especially since I had been bleeding every single day for over 4 months!

The blood in my cycle was also different. More often I had huge clots that were a darker color than I had ever had before. By huge clots I mean sometimes they were the size of my palm or even slightly larger. This happened at every period. Sometimes the first day of the cycle was the very heavy day. Like – BAM! You are on your cycle. The pain was also more intense than cramps I had ever had before. Like nearly crippling. Even though I am on birth control etc it would literally make it hard for me to breathe. I would be fine one second and the next I would be doubled over in pain trying to breathe through this assault on my body.

My solution: Farmicopia. The amazing Lily Mazzarella  has her MS, Herbal Medicine and is a Board Certified Nutrition Specialist. She is FANTASTIC and they do phone consultations as well as other options… seriously, she has been a life saver just as much as my fantastic rheumatologist has been. One of the things I love about my rheumatologist is that he is supportive of these other things for full body wellness!!! Lily and I met before I started the first round of Rituximab and she helped me make sure my body was getting the support it needed to survive this disease as well as the medications. Find an awesome nutritionist if you don’t want to contact Farmicopia. Not a Whole Foods or Sprouts person… someone who has a high level of education and not just a quick 8-10 month program. Those people are great, I am not knocking them in anyway – they can help several people – but if you are going through this kind of process you need someone who has more knowledge medically. Who will really know what is going on with you and what effects these treatments will have on you. Think of it this way… they are a GP and you need a specialist. Lily made me a custom tincture with Dong Quai and a few other things. In two weeks… I STOPPED SPOTTING!!! Seriously, my mood swings calmed down. My inability to keep from tearing up at the drop of a hat went away. It has been amazing. I take it every day just like my medication and it balances me out. Do not be afraid to look, with the help of an expert, for other things to support your system.

All of this was over a year ago. Since then there have been a few bumps in the road. I still occasionally spot a little but it is very infrequent and very light. Sometimes not even enough that I would need a pad or a tampon. It’s just noticeable on the toilet paper after I pee. I have had dark brown discharge as well – very old dead blood. It freaked me out because with Wegener’s and most vasculitis diseases there is worry about kidney failure. I highly encourage you to contact your doctor anytime something new happens and anytime you have a concern. However, this is something I am not worrying about. When it happens it is light and dark brown vaginal discharge is most often associated with old endometrial tissues. Being concerned about this is just one of the fun things about having a chronic illness. You have to always pay attention to new symptoms, just in case.

A couple things – it is important to me to not risk getting pregnant with the medications I am on so I choose to use birth control. I am not telling or even suggesting to anyone that they make this same choice. Every woman needs to do what is right for her; emotionally, spiritually, morally and physically. Also, I purposely did not list what is in my tincture because it is customized for me. I am not recommending my specific combination for anyone else. You need to speak with an expert (again LILY IS THE BEST EVER and the rest of the staff is pretty fantastic too) for what is right for you.

Another Thing We Don’t Talk About

He fell asleep. I could feel his hand start twitching. His breathing changed. Then that soft look comes over his face. He is gently breathing on my arm… and I am crying. I was crying before he fell asleep. Only, I didn’t stop and he went to sleep.

A few nights ago I finally realized how much we haven’t been telling one another. He had had a few too many drinks. Not drunk, but not sober. He vented about some of his frustrations about this process. How he gets upset because cancer is the big one everyone understands and everyone responds to. How people post pictures of chemotherapy treatments – but we didn’t when I was getting my infusions. How no one has a clue what you are talking about when you do start to tell them. Vasculitis doesn’t have any meaning for them. No one has any idea what we are going through – even if we try to tell them.

I had no idea at all that he felt this way. That he had even thought about it. He never told me he had because we don’t talk about it.

We don’t talk about what he is going through. It isn’t just me in this. We’re in this together. I have no idea how he feels about it or what he is processing. He wants to make me happy so he doesn’t talk about it. I don’t want to stress him out any more than I already do. I can tell he is; so I don’t talk to him either. I don’t tell him how sad, alone, scared, freaked out, shattered, disappointed, lost, frustrated, exhausted and so many more things I am feeling. When I start to ask questions or to talk about it he tries to reassure me. I’ll be alright. My case is actually mild. We still have so many options… etc.

Maybe I will be alright… but we don’t know that yet. I am NOT currently alright. My case may be mild but it’s stopped me in my tracks and stopped me from 80% of my life. It is still threatening to take away so much more. Very realistically it will take away so much more; if not now – then throughout my life. We do have options but they are slowly dwindling away. If this next round of Rituximab doesn’t work I have 2 more pills to try (methotrexate and cellcept) before the cytoxan. Cytoxan will take away so much from me. We may not get there… but every month that goes by that a treatment doesn’t work gets me that much closer to it. It used to be this far off thing. Now, it’s just around the corner.

I didn’t realize how much I wasn’t saying to him until I couldn’t tell him how broken I feel about not getting a puppy. I didn’t think it was an option where we live… when I found out it was it seemed like the exact solution I was looking for. It had always been the solution I wanted. I have asked around. I have asked those I love to come up with something else if they can and so far no one has come up with an option that fits within my limitations. I know he wants a dog too. So, he is only denying it because he really believes it will be some kind of horrible situation. Not one I understand… but still real for him. He told me my being upset felt like I was manipulating him. So I try to keep it in. That isn’t the relationship we have or the one I want. What I WANT is for him to get it – to just say, “Absolutely! Anything that makes you smile like that. Anything that can help heal your heart through this is worth it to me.” But he doesn’t; if he doesn’t feel that way I won’t push him into it. No matter what it costs me. So instead I do my best to keep it from him. How empty I feel. How lost I am. How desperately lonely. Away from all my people. Unable to live my life. Stuck on this couch not even able to read…

So he is sleeping… and I’m crying. I’ll pull it together and go back to bed. It’ll probably become another thing we don’t talk about.