Summer 2011 Update

All of my father's tests came back negative. They eventually diagnosed him with BOOP, which is more of a description of symptoms than an explanation for what is wrong. In other words, "They have no idea." They put him on Prednisone, which seemed to fix his lung problems, but caused all sorts of other problems such as muscel weakness and pain, shaking, severe mood changes, insomnia, etc.

Then my dad's GP reduced his dosage of Prednisone and my dad's joints "locked up". Even after weeks on the reduced dosage, he was unable to move. I think the reduction in Prednisone was too fast, but the GP said that is the schedule he always uses. He tried to make the taper longer, but my dad kept getting "locked up" and the GP would have to raise the dosage again. This went on for months until the GP eventually referred my dad to a rheumatologist.

The rheumatologist said that he had very rarely run into patients who just had a terrible time gettnig off of the Prednisone and suspected that my dad had the same issue. He tried to put my dad on azathioprine as a replacement to the Prednisone, but it caused abdominal swelling and liver toxicity. The doctor obviously took him off of that immediatly.

The rheumatologist then just set a really really slow taper schedule and after about a year, my dad was able to get off of the Prednisone. It was a really bad year though. I think my dad's health is not as good as it once was and we still don't know what happened.

In other news, I am doing very well. My baby girl is now a 4 year old preschooler. How time flies!

When I was very ill with the Wegener's and immunosurpressed, being able to travel seemed like something I might never be able to do again. I regretted that my husband and I had not ever gone on a cruise and that I had never seen Alaska. I am more than happy to say that we have an Alaskan cruise planned for next month to celebrate our 10 year anniversary. I can't wait.

Crazy News

So my dad has been struggling with pneumonia for the past month or so. He recently ended up in the hospital because he wasn't getting better and now they are telling him that he may have Wegener's too. I can't even wrap my mind around this. Wegener's isn't actually hereditary, so this is soooo weird. Maybe we were both exposed to something? Maybe it isn't really Wegener's that he has. They did a lung biopsy and a C-ANCA but the results aren't back yet. We'll know more later this week. Wow. Just, wow.

And Done.

I am officially in remission. Whoo-hoo! I am off of the methotrexate and not exhibiting any Wegener's Symptoms. It has been a very long time since I have felt so healthy. I was sick for so many years without knowing what was wrong before I was diagnosed. It is amazing to wake up and be able to walk without arthritis, to feel 32 years old instead of 82. It is a delight not to have a constant cough and runny nose. I am so happy to be able to go through a day without taking a nap (or two).

Now that I am off of the prednisone, I have been able to loose 25 pounds of the 50 pounds I
gained during treatment. I have been following the weight watchers program and have no doubt I'll soon be back at my normal weight.

Good luck to anyone out there who was diagnosed with this awful disease. Know that it is possible to get into remission and one day stand on the other side again.

Dropping the Methotrexate

Finally, finally Dr. A is dropping my Methotrexate dossage. I am down to 5 pills every Sunday night and will drop to 3 pills a week soon. Hopefully I will officially be in remission by Halloween.

Peripheral Vision

After all of the poking and prodding that I have gone through, I think one of more unpleasant tests is totally non-invasive. It is a test of your peripheral vision. You have to look with one eye into a box and then press a button whenever a tiny dim light appears. This goes on for several minutes and is very stressful. I'm good at test taking, but I have serious anxiety with it. I am always thinking, "Did I really see that? Oh no.. Did I miss one?"

In any case I am happy to report that my peripheral vision is still okay. I have to have it checked every 6 months or so because my pituitary involvement. Apparently the optic chiasma is near the pituitary so they think the WG lesion might spread there. All is well for now at least. :)

Off the Prednisone

Whoot! I am finally off of the prednisone. I took my last dose in January and have been doing pretty good since then. Lately I have had some joint pain especially in my wrists and fingers, but Dr. W (standing in for Dr. A) didn't seem too concerned. Dr. A is having visa problems or some such and can't seem to get back in the country. He's been gone at least 4-5 months. They hope he'll be back by my appointment in May. In any case, Dr. W says that he will start dropping my methotrexate at the next visit too. I am excited about that so I don't have to be so worried about getting sick all the time.

I should mention that I've lost about 10 pounds since last summer too. It has been slow going, but I am keeping at it. I think it will be easier now that the weather is getting nicer and we can start walking after dinner again.

Dr. A Visit

Dr. A has finally returned from the Cleveland Clinic. I am really happy he was able to go. I actually felt like he was more confident and capable during my last visit than he has ever been before. He is thinking about specializing in Wegener's and even talked about working with another specialist from St. Luke's to do a study on Wegener's.

My foot x-rays came back normal as I expected, but I am still having quite a bit of pain at the end of the day. My labwork is looking really good as far as being in chemically induced remission goes. He is dropping my prednisone to 2.5mg, which is exciting. I can't wait to get off the prednisone. Also, he looked at some of my chloresterol numbers and they aren't too bad. My LDL is 108, which would be great if I was a normal person but WG is sort of a risk factor so he would like it below 100.

The only bad thing was that my weight had gone up so much. I have gained almost 50lbs in exactly 1 year. That is a frightning 1 lb per week. Now, I know that 1) a year ago I had a lot of unexplained weight loss from the WG so gaining some of that back was too be expected and 2) most of the rest of it is from the stupid prednisone, but now that my dose is lower I really feel that I should be able to loose it. I sort of think I have picked up a lot of bad habits in the meantime though. Since I am always hungry and never satisfied, I just eat because things taste good... which means I can eat an enormous amount of food without ever getting any signals from my brain that I'm full. Also, the diabeties insipidus causes me to obsess about drinking so I end up drinking alot of calories (Oh my gosh! I really need to drink a glass of pomagranate juice right now!) I don't fit into any of my clothes anymore. :( Well, better than the alternative, right?

Ear Ache

My ear has been hurting the tiniest bit and it is terrifying. If I didn't have WG, I wouldn't even think twice about it, but now it is so scary. I was at the store today and push the grocery cart with one hand and had some pain in my knuckle. I was like, "Oh no... is that the arthritis coming back? Is this a flare?" I live in this constant state of bodily assesment now. And it's sort of funny... it's not the ear pain or the Wegener's symptoms that I am truly afraid of. It is having to go back on the Cytoxin. I think I might actually refuse to go on it again. I might insist we try something else. Anyway, hopefully this is nothing.

X-Rays

I got my feet x-rayed yesterday. I'm not quite sure when I'll hear back from Dr. A about them because he is doing a rotation at the Cleveland Clinic (which is well known for treating
WG) this summer. I am thinking he might already be gone. If I haven't heard anything by next week, I'll have to call his office.

Irony

Of course, I woke up with a headache on Saturday. I know it was because I bragged about not having had one in so long... or maybe it was because I was up till 2am the night before. I didn't even have a good reason for being up so late. Ross had to do work so he was using the laptop while I watched the Tivo and I didn't really want to go to bed alone. At least it wasn't too bad of a headache. 1000mg of Tylenol and a cup of caffeinated tea seemed to do the trick. Luckily Ross was able to deal with Amelia for an hour or so while I pulled myself together. Otherwise I doubt I would have ever gotten functional.

One of the hardest things about having a baby is that you can't take a break. You don't get a sick day and ironically, I am sick all the time. It doesn't matter how much your feet hurt from arthritis or if you are vomiting or have diarrhea or something else God awful, the baby still needs fed (and changed and burped and entertained and and and and and...) I don't remember anyone talking about that before we had Amelia. Maybe for other parents it isn't quite as big of a problem because they are only sick a few times a year and not constantly.

Oh, and I'm starting up my methotrexate again tonight.

Headaches

I was reading over some of my past posts and was thinking that I hadn't had a headache in a long time. It occurred to me that I haven't been on the Methotrexate for over a month so that correlates about perfectly.

A Month Long Cold and Sore Feet

I finally feel like I'm over my cold. Even though all my blood work looked good, I was still running a low fever and pretty congested last week so Dr. A put me on 10 days of Augmentin (even though I don't think I was showing any signs of a bacterial infection). I think he was just buying time. Anyway, he said if I still felt sick after I was done with the antibiotics he wanted to do a CT scan of my sinuses. Luckily, I really am feeling better so no CT scan for now. I haven't taken my Methotrexate in 4 weeks.

Around the time my cold started, I noticed that my feet were hurting again. Dr. A said that sometimes a cold can cause aches like that (I disagree) so he wasn't too worried about it. The last time I saw him, he examined them and thinks I might have a stress fracture. My second metatarsal was really tender and Prednisone can make you susceptible to stress fractures, so I guess it is a possibility, but I don't really think so. It's not like I'm in excruciating pain. My right foot especially hurts mostly at the start of the day and then at the end of the day when I take off my shoes and walk barefoot. It doesn't hurt so much that I can't stand on it though. Anyway, he wants me to get an x-ray next week (even though I read that x-rays don't usually reveal stress fractures anyway). But I don't really have a better idea of what might be wrong, except maybe I need new shoes. :)

Down to 4mg

I have another cold so I'm holding off on any more Methotrexate treatments for another week, but at the start of May, I dropped my prednisone down to 4mg. Whoo-hoo.

An Only Child

I am an only child and I loved it growing up. It has only been since I became an adult that being an only bothered me at all.

Being an only child made me more creative. I had to be able to entertain myself when I was growing up and now I am always in the middle of 6 different projects. :) It made me more of an achiever because my parents were able to give me so much undivided attention and structure. I am sure I cared more about pleasing my parents than I would have if I had had siblings. I think I stayed out of trouble and worked harder because there was no one else to hide behind. I also think it fostered a love of learning.

The only thing that was difficult about being an only child was defending my parent's decision to other people. I was often asked why I didn't have any brothers or sisters. For some reason a lot of people really frown on only children. Only children have a (IMHO undeserved) reputation for being selfish, antisocial and greedy. People would often backhandedly compliment me, "Oh, I am surprised you share so well since you are an only child. Was it hard to learn how to do?"

As an adult however, being an only child has been harder. My parents are divorced and my mom was diagnosed with breast cancer about 5 years ago. It really fell to me to take care of her. I really wish there had been someone else to share that burden with. Now that both my parents are aging, I am even more worried about taking care of them alone as the years go by.

Sometimes I also feel like I'm in a spot light. Everything I do is magnified and my parents pay a lot of attention to every little thing I do. If I had siblings, I think they wouldn't be so focused on me because their attention would be divided between us.

I had mostly decided I wanted more than 1 child for some of the reasons listed above, but I became sick soon after Amelia was born and the treatments have damaged my ovaries. There is now very little chance that I will be able to have more children. I didn't think about it much before I had Amelia, but now that the decision has been taken away from me, I think about it all the time.

Ups and Downs

Everyone recovered from their colds. I saw Dr. A again a couple of weeks ago and he dropped my prednisone down to 5mg. I didn't really have any side effects from that. He also raised my methotrexate to 17.5, which has made me feel a little worse. It gives me headaches and some more nausea. Dr. L told me to double my folic acid the day I take my methotrexate and the day after. I don't really think that has helped much though.

All in all, I think I am doing really well. Dr. A said I could get out more and didn't have to be so restricted with being in public like I was on the Cytoxan. So a few days ago I decided to take Amelia into the grocery store to pick up some formula. Of course, she spent the entire time running her mouth all over the handle of the cart. I couldn't stop her. I was just thinking, "Well, this is going to make her sick again. We're all going to end up with the flu!" Of course her nose started running yesterday and she is cranky. I am hoping it's just cause she is getting a new tooth (her 6th one!)

A Dreaded Cold

Well, despite my best efforts, I have caught a cold. Amelia has it too. I dropped my prednisone last Wednesday and started feeling bad on Thursday. I had a sore throat and a lot of congestion. I started coughing again. I never ran a fever so I thought I was having a Wegner's flair, but then Amelia's nose started running too and my stepmom (who I had been around the previous weekend) called and said she was sick also. On Monday, I called Dr. Awadh and he told me to increase my prednisone again and to stop the Methotrexate for the time being. He also preventively put me on a z-pack of antibiotics since I am such a high risk of an opportunistic secondary bacterial infection. I am still sick, but feeling a little better. Poor Amelia was up most of last night though. She is cutting a new tooth too. :(

Methotrexate Increase and a Prednisone Drop

I feel awful today. I am coughing some and congested. I have a headache and am exhausted. I dropped my Prednisone from 7.5mg to 6.0mg yesterday and I think it's effecting me alot. Ugh.

I've been on the Methotrexate 2 months and Dr Awadh has increased my dose to 6 pills a week. It makes me feel pretty nauseated at the start of the week (I take it on Sunday night). I also think it makes me moody, but I don't know if that is supposed to be a side effect.. maybe I'm just moody because I feel bad.

Goodbye Cytoxan

I should have thought about my pills a little longer before I took them this morning. It may have been the last time I ever take Cytoxan again.

I saw Dr. Awadh today and am happy to report that he is switching me from the Cytoxan to Methotrexate. My latest lung CT scan showed that both of my lesions had shrunk and I haven't had joint pain or other WG symptoms for months. I knew I was a lot better during this lung CT Scan. The last one was sooo hard for me. I kept coughing during it and could hardly hold my breath for the required 15 second intervals. This time it was a piece of cake.

I am very happy to be getting off the Cytoxan. I think I've been getting pretty fatigued and nauseated from it. I have just been feeling pretty icky the past week, although maybe that is from the augmentin. Luckily I am done with that now too. I am picking up the Methotrexate from Walgreen's tomorrow and will start taking a once weekly dose on Friday.

Ross started up his contracting position and all seems to be going well with his job. It is pretty nice to have things getting back to normal. The only real problem recently has been that either my mom or Jeff has been sick since I moved home. I haven't really been able to see my mom for a long time. She sends me emails all the time about how much she misses seeing Amelia and me.

Nails Again

I'm down to 10mg of Prednisone. Every week the drop makes me feel a little bad (headache, nausea) for a couple of days, but then I recover.

Although, I have actually been doing a pretty good job not biting my nails, one of them got infected again. My pinky nail broke off and I really don't even remember biting at it, but I must have. In any case, Dr. Awadh had given me refills on my Augmentin prescription and so I got it refilled. I've been taking it for over a week and it makes me feel pretty bad. I've been sick to my stomach and have lost my appetite some. Losing my appetite is a good thing I guess, since I've gained so much weight on the prednisone.

At least Miss Amelia has been sleeping though the night again. :)

Ick

Having some problems with the prednisone taper maybe. I dropped down to 15mg yesterday and have had a headache and been nauseated and fatigued all day. .. oh and cranky. Hope I feel better tomorrow. :(