Ramble On

My son has officially been diagnosed with Vitiligo, as I mentioned previously, I expected this but it hit me harder than I anticipated. For the past two days I pretty much moped around and felt sorry for him, for me, and for our family.

Vitiligo (vit-ih-LI-go) is a condition in which your skin loses melanin, the pigment that determines the color of your skin, hair and eyes. Vitiligo occurs when the cells that produce melanin die or no longer form melanin, causing slowly enlarging white patches of irregular shapes to appear on your skin.

I know. I know that it could be worse. I know that having this condition is not the end of the world and there are (some) treatments that could work for him. I think it's important to take the time to grieve when these like this happen. It's okay to feel bad, but it's important to stop too.

Today I'm feeling better about the situation and I'm going to support my son in whatever he decides to do in terms of treating his illness. Granted, he's only 9 years old, but I don't feel comfortable about making decisions related to his condition with out talking to him and letting him decide ultimately what is best for him. It's his skin, there are spots on his face. It's not something he can just cover up with clothing.

Tomorrow I take my son to the dermatologist to see if he's got Vitaligo, as we all suspect. One of my cousins (ironically, my son's God mother) let me know yesterday that she has it as well so now I'm almost 75% sure that's what it is.

I'm so tired of everyone being sick/ill/waiting to be diagnoised with someting. My mom's appointment at John Hopkins is next week as well, I think once everything is said and done I'm going to need to go somewhere warm and stare at the ocean. I just need a break. I feel like I can't breathe right now everything seems to be coming at me so quickly.

I'm trying my best to stay calm and too keep my own diease in check, but when I come here, it just all pours out through my fingertips. I hope you understand. I need somewhere to let it out.

xoxo

Today my mom was very off, she hadn't been out of bed in two days. I was trying to convince her to let me take her to the ER but she refused. She did make an appointment for later in the day (I wanted to take her to the ER around 10:30 AM, she got an appointment for 3PM), which is good, at least she was admitting that she needed some help. She's very stubborn and it doesn't help that she's a nurse too, I think those in the medical field are some of the very worst patients when it comes down to it.

While I was arguing with her to go to the ER my stomach was making these very loud groaning noises. I told her she was making my Crohn's angry, she laughed, that was good. I got her a cup of crushed ice and she ate three spoonfuls, then she slept for a bit.

Around 2PM I went back to check on her and she was in the bathroom sitting on a chair attempting to blow dry her hair. I have no idea how she managed to get her hair washed but after two days in bed I'm not sure if I could have hung over the sink and washed my hair, but she's very concerned about her hair so I sort of knew she would make an effort to do something with it.

While I was standing there watching her blow drying I noticed how thin her hair has become it's especially noticeable when it's wet when the hair sticks to itself in clumps. As I stood there looking at her and thinking about all of this I felt nauseous. I don't think it was the thought of her being bald but because if she was she'd be obviously sick, right now she can sort of hide it. She hasn't driven in two years, but she's got a disabled parking permit and sometimes we get dirty looks when we use it because the only thing people can actually see is a slight limp.

I'm feeling really disconnected from my mom lately. She's so sick, and I hate seeing her like this. I think it's hard for her too, having to rely on other people when in the past she took care of everyone else, as a wife, a mother, and a nurse. It must be so hard for her attempting to adjust to this new life. It makes me so sad for her. It makes me sad for me too because I've lost that person that I use to know and I feel like I'm finally mourning for her and trying to get to know this new person who is inhabiting my mother's body.



It's sounds crazy but knitting this was like a prayer, I'm not really sure how to explain it, but it was meditative. It helped that the pattern was created for a woman who had lost a child and I think that sentiment stayed with me throughout the knitting process. It was a comfort to feel the yarn moving through my fingers creating this cloth out of string, it's amazing to watch and to be a part of. I felt like my mourning for my old relationship with my mother began with knitting this shawl I touched on some emotions that I had been denying myself for a while and it was very cleansing for me. I have plans to knit two more, one for my mom and one for my Aunt, who I've grown close to over the past month.

I feel like healthy to try to be productive through all of this. Maybe I could just curl up and cry like I would have in the past but I can't now. I have to move through this I know that I've been given these challenges for a reason and I have to be here and present to feel these things that I've been avoiding for so long.

So if I have to cope with knitting needles in hand, so be it, there are far worse things I could be doing.


pattern is Far Away so Close by Sweet Mama, Small Sugar.

Over the weekend my husband took our kids to visit his family. I stayed home to paint the dining room and the kitchen. It was in dire need and I don't mind painting. It was so quiet here with out kids and I had a lot of time to myself while I was rolling "pale sunshine" on to he pepto pink walls (who paints their dining room pink? whatever!). 

The drama has been thick recently. My Aunt had a house fire (she's fine, damage is limited to one area,  the firemen got it quickly) which scares the crap out of me. Fire is one of my worst fears and especially since hers was electrical, well that just freaked me out more. My mom doesn't think my Grandma is going to last to the winter, which also scares me. She's 93 years old, she's had a good long life but I've never lost a Grandparent before. I know I'm lucky, to be nearly 30 and never suffered a loss like that but now here I am staring it in the face and I'm not sure what to do.

It was nice to focus on painting. I don't know if it's my medication or what but I've been able to focus lately, before my mind was going a mile a minute and I could really do one thing at a time. Now it's like a check list up there, I can focus, I can complete one task in it's entirety and move on to the next one. It's incredible! I feel silly for saying that I'm excited that I can actually do the dishes without getting distracted by the fact that the floor needs swept and end up only doing each task half way and ending up with more of a mess then I started with. Maybe that's confusing and it was/is just me, but I'm glad that's changed.

I guess I never realized that I never got a break, there was always something I was freaking out about or anticipating in my own head. It was never quiet. Over the weekend I took two long hot bubble baths, it was sort of like I was getting away with something because I usually never get the chance to do that. It was wonderful to actually relax with out rehashing all my mistakes or be making a mental list of all the other crap I had to do.  I never knew what I was missing out on here. I'm so much calmer, the noise and the random pain I was having in my gut nightly has stopped. My GI told me that she thought these symptoms were being caused by stress, I really didn't think I was under all that much stress at the time because that is what I was use to and accepted as "normal"!  She was right, and thank God she told me!

It's amazing what someone can convince themselves of to the point of illness and breaking. I don't want to be broken anymore, I just want a normal, boring life. That's it. I want to be comfortable in my own skin, have enough money to take care of my family and make a home to raise my children in. I'd also like to have some chickens but if that can't happen I'll be okay with that ;-)

I've been on Exfexxor 75mg for one month as of wed. I've seen a lot improvements in my mood and in my demeanor in general. I'm not yelling (much) at the kids any more. My paitence seems to have improved quite a bit, I'm thinking before I speak (huge issue for me), and I'm no longer crying over everything (tv commercials etc). I knew something was different when I was watching American Idol and didn't start bawling when Scotty sang Where Were You When The World Stopped Turning. I sat through the whole thing and actually listened to the lyrics. Usually, I would have been a heap of salty tears and snot, but not that night. I was amazed!

My anexity and panic attacks have really lessened in severity. My car decided it doesn't want to work any more and stalled out five times on the way home from the grocery store. My husband was driving and we had all three kids in the car, normally, I would have been crying and probably screaming or something but I just made jokes. We were on rural roads, we weren't in the middle of traffic or anything when we stalled. I have enough family around here that someone would have given us a ride. We were going to be okay so in the end it was just ridiculous and funny (the car is 12 years old, this wasn't totally unexpected) !

On the other hand, I'm still tired. A lot. I don't feel like I'm ever getting enough sleep and I'm waking up 2-3 times a night. I also have some smalls zits now, which would either be from the meds or the changing weather. My appetite has not improved, in fact, I'm not hungry at all any more. I am still eating and using an app I downloaded to my ipod to track my calories but I am just simply not hungry, which isn't a good thing. I weigh 113lbs right now. I'm only 5'4" but I have a medium build and wide (or as I like to say, childbearing) hips. My ideal weight is 120lbs. That's how much I weighed all through high school and college. I'd like to try to get back up to there again. I have some work to do but with absolutely no appetite it's hard.

Yesterday I had a GI appointment. I weigh 113lbs. I was warned not to lose any more weight. My GI is also the one who suggested that I might be dealing with some depression symptoms that could be affecting my appetite (I am eating but since I'm not very hungry, I'm not eating enough.) since my Crohn's is seriously under control (yay for being under control!). She spent an hour with me and got me in to see another doctor about my depression issues asap, she even stood there and made the appointment for me.

While I was waiting for the secretary to process my co-payment and paperwork she leaned down to me and said, "You know you're going to be okay". I cried (cause that's what I've been doing lately) but that's exactly what I've been waiting to hear from someone, anyone, other than myself for so long now. I just feel like maybe this time, everything will be okay. It's a comfort at least.

I go back to see her in July, for my one-year-Crohn's-iversary. Well not really I guess, I wasn't officially diagnosed until August 4 2010 but July 21 (the date of my appointment) was the day I was released from the hospital and I had it in mind then that Crohn's was what I was dealing with, so I'm going to go with that date!

I haven't been feeling great, since pretty much last Wednesday. I felt a little better on Monday during the day then last night it my entire right side hurt, terrible. This morning was okay, still sore but by mid-afternoon I was feeling pretty awful. I was nauseous and dizzy. I drank a bunch of water and coconut water, I dunno. Right now I'm feeling quite a bit better. Nervous though and quite frustrated with myself and my health in general.

My kids were home from school yesterday due to the -20 degree weather. Now I know why school is out in the summer, so you can have your three children go outside to play in the warm weather! I'll admit that they watched way too many movies yesterday (three) and the baby didn't get her afternoon nap. Oh well, it happens.

Today I started using a new supplement, L.Glutamine hopefully it'll do something nice for me. I'm excited about the results others had with it, however, everyone is different so we'll see how it works out.

I feel like all I'm writing about is Crohn's and I've mentioned in other pieces that I don't want it to take over my life, and that is true, and most of the time while I'm engaged in other activities (not blog writing) I don't think about it but now, when I have time to sit and think it bubbles to the surface. I think staying positive is important, to not look at it as a problem but as an opportunity for growth. So far, I know that having this disease has strengthened my relationship and my faith in God. I also can say with confidence that I'm taking much better care of my teeth (flossing every day)! I'm taking my health more seriously than I ever have before in my life because I have to be okay to take care of my children. It's just like they instruct you to do on an airplane, but your oxygen mask on first before helping others around you.

I have to get myself together health-wise first before I can do anything else, it's important, I have to put myself first in this situation. I'm grateful for that realization.

Today I woke up feeling pretty good. No pain! Things were going on per usual until I got a phone call around 1 PM from a nurse working for my insurance company. Apparently they are now providing phone support for people with chronic conditions. Then it hit me, shit,  I have a chronic condition.

I sort of had forgotten about it this morning but talking to her got me really upset. It was was her tone of voice, she was nice, of course, but it was the tone that made it apparent that she was very very sorry for me which made me feel horrible. I hung up the phone and just cried. I’m not sure I even know how to articulate this. It seems like people just know all the bad stuff that can happen with the disease, they don’t want to talk about self care during times of relative good health, it’s like we’re always preparing for the next flare. I know the tone of voice was because she knew just what could happen to me and how bad it could get. Like it was a matter of when and not if it was going to happen and that scares the hell out of me. I know how bad this can get and I’m determined to do everything in my power to not let it happen. That doesn’t mean that it won’t and maybe I’m just buying myself some time (or maybe I’m not at all and my next flare is just around the corner).  Just once I want someone in the medical field to say, “you know, you’re going to alright”.

As of this writing I have been awake since 7AM Tuesday morning. It is now nearly 5PM on  Wednesday.

My two year old has had a cold for the past couple of days, runny nose, normal stuff. Yesterday she started with a dry cough and by 7PM Tuesday night she was in full blown respiratory distress. We were doing nebulizer treatments every four hours through out the night and called the doctor in the morning. We took her in as she was officially diagnosed with asthma. We knew it was coming but it still felt like someone was stabbing me with a knife while I watched the doctor type the word into her chart.

She's on a round of steroids, breathing treatments every three hours, and we follow up in a week. Right now she's sleeping on the couch.

Here she is just two hours before she could not breathe play with my ipod. It's so scary how fast things can go from fine to very very bad. Hug your babies mamas.

On Saturday I drove the 80 miles to see my pregnant friend. When I got there I told her I had a bad "Crohn's morning" two episodes before I left the house and I had to stop at a rest stop on the way down to her house. Other than that it was okay! I drank a ton of water and made it home okay, except that during the course of driving my hands started feeling tingling. My carpel tunnel has been bothering me a lot the past couple of weeks. I'm sure typing right now is not helping but I am wearing my wrist braces. I'm sort of shocked because I was doing so well with it, right before my major Crohn's flare back in July they were really bothering me and then they just stopped until now. So of course my mind is going there, that I'm going into a flare.
I've read a lot about the "three month set back" and I'm sort of confused by it. Three months since my last flare, three months since starting the meds, or three months since starting the diet? I have three different dates, of course they are all within a week of each other and that week would be now. My flare that landed me in hospital was July 19, Date of Diagnosis was Aug 4, I started Apriso Aug 9, and I started on the diet Aug 14, so there go you. I'm also thinking that me freaking about this time line is probably not helping either.

I think the most frustrating thing is that I just have to sit here and wait to see what happens. I have no control over it, I'm doing everything in my power to stay healthy but I have to realize that it may just not be enough and that's really hard for me to admit to myself.

I am glad though, that I did go ahead with my plans on Saturday despite how I was feeling in the morning. I could have easily just given up and went back to bed and felt sorry for myself the rest of the day. I did take some precautions, I packed extra clothes, baby wipes, and made sure I drove down on the highway in case I needed a rest stop/gas station/any manor of toilet. I had to make provisions for my condition. Luckily, with three kids, I'm used to hauling around extra clothes, food, and making sure there are rest stops available.

I did feel a deep sense of shame packing up my extra clothes though, what if I had an accident? I'm a grown woman for crying out loud. It's always in the back of my mind, a constant reminder that I have this condition and this condition needs my attention. It makes me angry, sad, and annoyed all at the same time.

Visit #1: Primary care doctor. Showed up about five minutes early, they took me back right away and got my weight: 118lbs. Went back into the room where I read every poster on the wall and starred at things while I listened to my doctor chatting up the nurse about Christmas shopping and his son's new job. I waited  forty minutes past my appointment time in that tiny little room. At one point I actually thought they forgot about me and debating wandering out into the hall to find someone.

The actual appointment only took ten minutes. He said, "so you were diganosed with an inflamority bowel diease, which one is it?" *cough* I hate when they don't read the charts. The upside was that he renewed my birth control for me since I mentioned that now my insurance doesn't pay for a pap test every year now (just every 3, since I'm old, in a relationship, and have never had a bad pap). So I was happy about that. I don't have to go back for another year. Yay!

Visit #2: GI doctor. Got there approx twenty minutes early because this appointment was about a forty minute drive from my house. I thought I made pretty good time considering I had to drive through the Penn State campus to get there. Those students don't like to follow the "look both ways before you cross the street" rule. They just walk, it's dangerous, and is super stressful to drive through. Apparently there is another way to get to the office, which was explained to me before, but I tried that way once and got terribly lost so I just go the way I know how now. It makes my life a little easier.

Anyway...got checked in and weighed (again) this time it read 116lbs. The actual appointemnt was very quick and positive. She gave me a month's worth of sample medication and told me not to worry about asking for more. She wants to see me again in 6 months, as long as everything goes okay. She did warn me that with Crohn's things go from good to bad very quickly, which scared me, but I need to stay postive about this. Whatever I'm doing is working so I need to keep at it.

My weight, of course, is an issue but not an urgent one as of yet. They obviously do not want me to lose anymore weight but I'm not yet unhealthy for my height (5'4"). I am trying to eat more, I just get full so quickly right now. On the other hand I can say that I haven't lost all that much weight (only 20lbs since July 19th when I was admitted to the hospital). I wasn't heavy to begin with so 20lbs is more noticeable on me. 

I have to say I was dreading these appointments. My blood work came back great, my symptoms are well controlled, I was nervous that they (the doctors) were going to try to start taking me off my meds and I'm just not emotionally/mentally ready for that yet. I need to take things slow here. I'm still trying to digest (har har) my diagnosis. I don't want to go and start changing things around now. Besides we're going into the holiday season, I'd like not to be sick or adjusting to new meds.

Two doctor's appointments this coming week: one today, one tomorrow. Today is my primary care doctor, tomorrow is the GI where I will make it a point to tell her that I can not afford 118 dollars a month for my medication, ask for samples, and any sort of assistance card she can point out to me.

I just filled out the forms to get medical assistance via the state. I never want to do that and I felt sick the entire time. Despite having okay health insurance via a major employer in our state, it just isn't enough. I find it humorous, that I've been pretty healthy my entire life, I never had to worry about this stuff because my father worked for a major medical care provider and we had great insurance while I was growing up. Then I got married and we were in the Air Force, now a lot of people complain about TriCare but we never had any issues with it and never had to pay anything out of pocket. Now we're in the "real world" paying a good percentage of my husbands salary every month for health insurance that as of Jan 1 will be covering LESS than what they did previously. The cost of course, is going up. I'm seriously tearing up right now. It's just like a giant hole, ya know? Try to get ahead, save some money, try to do right and then it all just goes away. One thing after another.

I don't think I posted about this before but about a month ago I requested some lab work and lazied around until last Thrusday to actually go get it done. The doctor, it turns out, had ordered 6 tests when I had only requested two. It was a lot of vials!

Anyway I got my results today thanks to digital medical records and everything looks fine except that my clotting rate is slightly too slow. Seriously missed "normal" by .02 which is an indication that my vitamin K is low, which I expected due to the fact that my legs were covered in very large scary looking bruises. So there's that. I go to my primary doctor next week, I'm not sure if he's going to do anything about that right now or just recheck me in a couple of months. I also get to visit the GI next week as well, I'm going to swallow my pride and ask for more samples of my medication if she intends me to stay on it. $118 a month is a lot for meds I may have to be on for the rest of my life!

We went to the beach.

My youngest daughter went into respitaory distress and was admited to the hopsital. At the beach.

She got out on Monday just in time for her 2nd birthday which was on the 21st.

We had a nice time after all that drama. I don't like to dwell on just how sick she was, she has not be officially diagnosed with anything yet but I'm thinking it's asthma. I have a strong family history of it, and listening to her breath, the sound of her rattling chest, it all just clicked into place for me. We'll see how long the medical establishment takes to get to that point. We are now the owners of a nebulizer, and she has an appointment for her 2 year check up on the 30th. I will also be getting my flu shot that day, and so will she.

She's going to love me, and then I will take her to McDonalds because that's what we do after shots. For babies that is. I am still on a very restricted diet to my Crohn's.

I've been thinking a lot about Christmas lately. I'm not sure that it helps that it's the 25th and that means it's "Christmas in September" on QVC and they keep saying that it's only 3 months until xmas which is enough to put my into a panic. I have done some shopping a already but I'm not near done, and I don't even want to talk about all the knitting I should probably be doing right now. So much to do. I need to prioritize because I'm never going to get it all done at this rate.

To be perfectly honest, I have not been feeling well. I went off my steroid and since there I've felt "off". The sad thing is, if I don't eat, I feel fine, as soon as I do I feel like I have to run to the bathroom (and for a few hours after that). I'm having pain, cramps, I have no idea what this all means. My doctor is not worried at this point, but I am. I have no idea what "normal" means. I have no idea how long I've been sick. My doctor mentioned that I maybe have never been lactose intolerant it was most like a "simmering Crohn's" so apparently, it has gotten worse. Is this disease progressive? I've find mixed information on this and I'm seriously freaking out just from sheer lack of information. There is no set diet, so set drug therapies, no set anything for this. It's just all trial and error and I think that is what freaks me the most: the lack of control. I have no idea what is going to happen to me and that scares me.