Arthritis Mom

It's been a while

2009-05-08T21:41:00.000-07:00

I have not posted in a while and my how time has flown by. Before jumping back in I'll give an update. I'm still taking Humira weekly though I'm sad to say I don't know how much it's helped. I've only been able to get my prednisone dosage down to 3 mgs daily and I feel like I'll never be weaned off of it. Though as we all do with rheumatoid arthritis and other similar chronic illnesses, I manage. I've been very busy taking graduate classes in the evenings, the older kids have more going on than ever and the twins are walking and talking, a lot of fun but exhausting all the time!

I've had another health issue stemming from an abnormal pap, leading to a colposcopy and then a LEEP procedure a few weeks ago. I find out the results of that this coming week. On top of that I had some really bad stomach illness last week which had me nearly incapacitated for a couple days. Combined with the stress of the end of the semester with one exam, one presentation and two papers - led me right into a big RA flare. It was too much and I began to feel I was falling apart but as usual, I keep waking up all in one piece. So I keep plugging on....

Approved again.

2008-11-01T20:42:00.000-07:00

The pharmacist had a phone number to an actual person who worked the weekends and knew something at my insurance company. He was able to discover the insurance had approved the prescription but had not entered it into the system. That makes sense, because when you approve something you should just keep it to yourself!

Anyway, they were able to fill it at the local pharmacy today. So I am officially on Humira weekly instead of bi-weekly, I'll let you know how it goes.

Approved, Not Approved?

2008-11-01T07:08:00.001-07:00

This is the biggest run around I've gone through in a long time, if ever.

My doctor gave me a script for weekly Humira, I gave that to my pharmacist, who submitted it to my insurance, where it was denied. Pharmacist called me, I called doctor, doctor called insurance, insurance asked for more info, doctor submitted more info, insurance asked for even more info, doctor submitted even more info.... That's all normal and expected, it's expensive and I don't blame the insurance for having a rigorous approval process.

Then it gets ridiculous.

The insurance company's mail-order pharmacy group called me earlier this week to tell me my weekly dose of Humira was approved. Hurray! They wanted me to get it through them, I said I prefered to continue using my local pharmacy. They said they could send it to me that day, I said I'd think about it for the future but did not want to switch to mail-order right now. They said okay. I called to get my script filled and my local pharmacist says it would not go through! What?!?!?!?

He gave me an 800 number to call. I went through three automated options each time entering my member ID, confirming it was entered properly, stating my birth date, and being transferred, only to then hear the office is closed until Monday morning. Finally I chose the option for the mail-order pharmacy group who had told me my prescription was approved. They said they could not help me, that I had to call the insurance company directly. I called them, choosing several options to reach a person, each time entering my member ID, confirming it was entered properly, stating my birth date, and being transferred, only to then hear the office is closed until Monday morning.

Ahhhhhhh!!!!!!!!!!!!!

Took a while, but approved

2008-10-29T13:20:00.001-07:00

It took the insurance company several weeks to approve my prescription for weekly Humira, but they finally did. I have to wait a few more weeks and I can call to discuss decreasing my prednisone dose!

I haven't been posting much, life has gotten so busy. There is a lot more chasing the twins around now that one is walking, we've had a lot more activities to attend for the older kids this Fall, plus school now.

One thing about being busy, you don't have as much time to worry about your pain, you just have to go, go, go. But the weather change to cold, rainy and even snow yesterday, has hit me hard as usual. Hopefully the extra Humira will make the difference.

Still waiting

2008-10-13T07:17:00.000-07:00

The insurance has not approved my prescription for weekly Humira yet. I don't blame them for resisting it. It's darned expensive medication! Hopefully we'll find out tomorrow if it's been approved.

Problems with Template

2008-10-04T23:11:00.000-07:00

Sorry everyone - there is an issue with my template and it's not displaying correctly. I apologize for the inconvenience, I will resolve it as quickly as possible.

It's official, 52 shots

2008-10-03T06:24:00.001-07:00

I went to the rheumatologist yesterday. We had previously talked about prescribing Humira weekly instead of bi-weekly. I have been feeling better since my last visit but more days than not I have pain in my feet, hands and/or elbows. We know pain means inflammation, and inflammation means joint damage, and we want to stop joint damage. Plus I can't seem to get to the point I can wean off the Prednisone. If more shots means getting off Prednisone it will be worth it.

I am feeling very lucky to have health insurance.

Speaking up

2008-09-21T20:57:00.000-07:00

Last week I was in class and we were discussing medical illnesses and the affect stress can have in developing the illness and on treatment of the illness.

Not being shy, I offered up that I had an immune disorder and the effect I felt stress had on my disease. I like to tell myself I'll keep these details private but I am a very open person, so it often comes out. Even when sitting in a room of 25 people I don't know.

At the break two people approached me to tell me about their experiences, one with rheumatoid arthritis and one with another immune disorder.

My invisible illness was visible that day, because I made it be visible. Sometimes speaking up is the best way to find out you are not alone. And it has the added benefit of helping others around you to feel less alone too.

Helpful, or not

2008-09-18T20:59:00.001-07:00

It appeared the babies were learning to be helpful. They have figured out how to get the wipes out of the wipe dispenser and knowing I am the one who uses the wipes, yesterday my little girl decided she could hand the wipes to me while I was changing the her brother's diaper. That was nice. It lasted one day.

Today might have been a better look into the future. One baby pulled out a bunch of wipes in rapid succession and made a break for it. The other baby, noticing that I was distracted, saw an opportunity to escape diaperless. The first baby swung back around to confiscate the unattended dirty diaper.

There was a moment there when I was unsure of my ability to get the situation back under control. I saw myself giving both of them baths and having to clean the carpet before we had even eaten breakfast. I wanted to go back to bed. I managed, but it was close. Too close.

I see it, it's just around the corner. They are going to double team me and this RA mom is going to need to be very creative to survive.

Ever Present

2008-09-17T17:52:00.000-07:00

I feel that I have turned a corner that I am now having about as many good days as bad days, but even so it is always there.

I was wondering if I've ever gone a full day without thinking about my rheumatoid arthritis. I may have, especially before I went off my medications and got pregnant. The medications used to work really well and I had days that I felt totally normal. Of course, there have been lots of ups and downs in the 2 years since then.

It seems whatever RA throws at me becomes the new normal. When I did well on medications and had no other major challenges, that was normal. When I was off my medications and doing miserably that became normal. Now that I have a few good days, a few bad days, then a few good days, now this is getting to be normal. Even the inability to go a full day without thinking about it, that is normal now too.

Waking up

2008-09-14T22:52:00.000-07:00

This morning I woke up and immediately had the image of being on a roller coaster. I was at that point where even though you love roller coasters, you are screaming "noooooooo" and wishing you had not gotten on the ride that day.

I never really know how it's going to go. If I have a few great days and then a not-so-great day, will the following day be better or will I head toward an RA flare? It's a little like riding that roller coaster blind, not sure where the drop-offs are or when it is going to end. That's the most thrilling way to ride the roller coaster, but the scariest too. I'd bet most people want to know what's coming next.

When I woke up today, in addition to my foot that was hurting yesterday, I also had pain in one knee and in my elbows and hands. Once I was up and moving all my joints did start to feel better. The fatigue was probably the worst part of the day. Now at the end of the day nothing is hurting too much and the fatigue is mostly gone too. Time to go to sleep and see what tomorrow morning brings.

The Floor

2008-09-13T08:36:00.000-07:00

I remember when I was younger my mom had our whole house carpeted. We had great hard wood floors but they were cold in the winter, and they hurt my mom's feet to walk on because of her RA. I missed the hard wood but carpet is nice too.

But even with RA, I prefer hard wood floors. I have had hard wood in every place I have lived in the last 10 years. Unfortunately for me, I'm having one of those days where a joint on or near the bottom of my right foot is painful. If my mom said I told you so, she'd be right, it is harder to walk on hard wood floors when your feet hurt! Note: my mom has never actually said "I told you so."

I'm not giving up my hard wood floors just yet. I might use the slippers my mom left here on a visit a few years ago. They are very soft, in fact so comfortable that they often walk away while on my stepson's feet. I suppose I will need to reclaim them this morning.

A great day

2008-09-09T20:17:00.000-07:00

I felt really good today. No significant pain or stiffness earlier in the day and only a little bit tonight because I'm tired. We had a huge storm this morning so that's surprising, I guess my RA doesn't predict the weather so well after all.

The day started with my little girl growing up. She has been trying to feed her food to me when she is done eating. She previously threw her extra food in her brother's high chair so this is an improvement. She offered me a piece of banana this morning, and then said "mo?" which means "more?" I'm always encouraging them to ask "more?" because their preference is to scream at the top of their lungs when they want more food. So I took another piece of banana from her little banana-covered hand and when I did, my little girl clapped for me! She was so proud of her mommy learning something new!

The day ended with my little guy growing up too. He took his first steps. Three unsteady, uncertain steps all on his own before he collapsed giggling in my lap.

It was a great day.

Trying not to think about it

2008-09-07T19:39:00.000-07:00

I have another rheumatology appointment coming up in a few weeks. I can tell my RA isn't doing well enough to start weaning off prednisone. I don't like being on prednisone and it takes such a long time to get off of it, and I can't even start yet. It's depressing.

Most of the time I try not to think about it when I take my medications. I much prefer being on methotrexate and Humira without the prednisone, not only because the worst side effects I have experienced are from prednisone, but also because prednisone is daily and the others are weekly and biweekly. It's easier to forget about the medications when the only thing I take daily are extra folic acid and calcium.

Today I had to think about it. I looked into that bottle full of little white pills and paused. Such an unwanted partner in making me functional every day. Can't be happy with them, can't throw them down the drain. That's prednisone.

Easy to forget

2008-09-04T21:01:00.000-07:00

I have not been back to work since the twins were born and I guess I'd forgotten. I'd forgotten what it's like to be around people who don't know about the rheumatoid arthritis.

I was sitting in class tonight and feeling fine. At the break I stood up and realized my knees had stiffened up. As I made my way to the restroom the old thoughts ran through my head. Are my knees going to loosen up after walking a bit? Is it noticeable? Can I walk a little more normally even though it hurts? No. Is someone going to ask me if I have a sprain? If they ask what am I going to say?

I often decide what to say at the last minute. On one hand I don't know the other students, and it's none of their business. On the other hand I'm going to be in class with them for several months and some of them I'll see in future classes, and it's better to be open and honest if asked directly. I can go either way.

Luckily for me by the time I returned to the classroom the stiffness had worked itself out. During the rest of the class I adjusted positions several times and stretched my legs under the table every so often. My knees felt pretty good at the end of class. Now I am at home with my feet up and all those old questions have been put off for another day.

Exercise update

2008-09-02T20:49:00.000-07:00

I had a good four days last week where I remembered to exercise each morning. When the twins first wake up they have a bottle and after that are usually ready to play for a while before breakfast. During that playtime I can work in about 15 minutes of exercise. But on the fifth day I forgot to exercise and I felt noticeably worse. I was more tired and achy. Then I forgot to do it the next day, and the next. My on track is officially off track.

I have no doubt that exercise will improve my RA symptoms and that the morning is the right time to do it. Unfortunately the kids are back in school now and that only adds to the list of morning activities to fit in. So it's back to the drawing board.

There are benefits

2008-08-31T09:26:00.001-07:00

We took the kids to a baseball game last night. I was walking around with one of the babies and noticed many people there with visible illnesses or disabilities. To them I look like any other mom walking around with her cranky baby. On this night I was feeling lucky to have an invisible illness. I always say if you have to have a disease there are worse one's to get than rheumatoid arthritis, and the visible/invisible factor is another reason this is true. If I want to share my invisible illness with someone it's my choice. If I want to pretend I am healthy and normal, most days I can. Even when my foot hurts people easily assume I sprained something and it's temporary, not a chronic illness that I will be dealing with every day for the rest of my life.

There are many with rheumatoid arthritis who's illness is visible, who need canes or wheelchairs to get around and who have noticeable joint damage. There might be a day in the future when I don't have the luxury of faking it. So for now I think I'll count my blessings.

Back to school

2008-08-29T09:00:00.000-07:00

It's been a long time since I sat in a college classroom. Last night was my first graduate studies class and it was fun! I'm definitely ready for something new.

The professor went over the syllabus and there was a section covering disabilities. It was standard language about requesting special accommodations if you need them. I don't need any now but who knows when I might need accommodations in the future, in school or the workplace or wherever. A society should be open to providing assistance for even the often hidden disabilities like rheumatoid arthritis. When I went to college years ago that language was not included in the syllabus or covered in class, even though the American Disabilities Act had already been passed. I know our society has room for improvement when it comes to people with disabilities, just ask someone with an invisible illness who has used a blue parking tag. But I also see improvements, increased awareness and acceptance in a lot of places too. For those who are part of the effort, it's noticed and appreciated.

Ready, set, climb!

2008-08-26T20:31:00.000-07:00

I thought the order goes first sit up, then crawl, then walk, and finally run. My little boy has a different idea. He's ready to walk but has decided to take a detour and work on climbing first. Yesterday he climbed up on a box. This morning he climbed up on the fireplace hearth. By this afternoon he was working on wedging his little toes in between the cushions so he could scale the couch and checking out the side table for vertical possibilities.

I admire his determination. When I tell him "no" he gives me a gigantic grin and keeps on going. Sometimes he stops for a second when he looks at me but his knee goes right back up in an effort to go higher. He can't help himself.

It was a good RA day for me. And it's a good thing because I needed the energy and quick reaction time. I am told my oldest stepson was breaking other babies out of the infant room at his daycare as soon as he could walk, and by 18 months he was borrowing the keys and backing the car into the front yard. So a little bit of this might be genetic.

I wonder what tomorrow will bring.

Hiding it

2008-08-23T11:03:00.000-07:00

I was thinking the other day about how much rheumatoid arthritis is part of who I am. During and after my diagnosis I worked to accept that I had this and even embrace it.

But it's often a secret part of who I am. I can't go around having everyone feeling sorry for me. I don't want pity. When other parents see me lugging twins around it might look to them like a lot of work but they don't know about the pain that comes with it. When I look tired they don't know about the fatigue that I'd have anyway. Even when I do tell people, I tend to minimize what it means to my daily life.

I can't think of anything else that is such a big part of my life that is mostly hidden from others. I feel like some epiphany should come from this realization and I was going to post about it, if only I could come up with a point to make. Then yesterday I checked my arthritismom email and found out that National Invisible Chronic Illness Awareness Week is coming up soon. Oh heck, that's right, I'm not alone!

This year National Invisible Chronic Illness Awareness week is September 8-14. They have a website and a blog where you can read more about it. It's not just for the couple million of us with rheumatoid arthritis, but those with depression, diabetes, eating disorders and other chronic illnesses as well. They have some good articles about invisible illnesses and the issues you face when people don't know you are battling something every day of your life.

Mostly I think it's fun to say. National Invisible Chronic Illness Awareness week. It's a mouthful, but catchy.

Today it's not so invisible. My right foot is swollen and painful, my 11 year old stepson just informed me I am walking with a limp, just in case I didn't realize. I did realize. Hopefully I can get back to being the invisible arthritismom tomorrow.

On the verge

2008-08-22T05:57:00.000-07:00

The twins are on the verge of walking. I have received numerous warnings that when they start they will automatically run in different directions causing me to split in two in order to save them both from certain peril. This may be true but I'm excited anyway. I'm hopeful that having them walk with me is easier than carrying the both of them everywhere. Yesterday I was able to encourage both of them to crawl to me for a diaper change instead of chasing them down like I usually do. Being able to tell them what they need to do and have them understand me is another big step forward. These milestones are going to make my life easier especially on bad RA days. I think. I hope. I'll let you know either way.

Motivation - where is it?

2008-08-19T20:17:00.000-07:00

I've been watching the Olympics and as usual I am amazed by all the athletes. The amount of work and determination they all have to get where they are is unbelievable. They all look so fit, healthy and strong. I can't imagine the hours they spend training.

It makes me wonder why I lack the motivation to do simple regular exercises. I don't have any sports related skills to perfect but I do know regular exercise makes my rheumatoid arthritis better. I know this because I have had times when I have exercised regularly. But right now it's not part of my daily routine so it just does not happen. As much as I want to count it, I don't get that much of a physical benefit from chasing after the twins or even carrying them out to the car one in each arm. It's not just the RA benefit I need, I've got some pregnancy weight still haunting me (prednisone certainly doesn't help) and I'm sad to say that flabby part on the back of my upper arm has made waving goodbye a thing of the past.

So is it okay to have a new years resolution in August? How about a new school year resolution. I will prioritize exercising and make it part of my daily routine. Starting tomorrow. I'm pretty sure.

More stress on purpose?

2008-08-16T18:41:00.000-07:00

Not long after developing rheumatoid arthritis I changed jobs. I did so in part because my job was stressful, and I knew that reducing my stress was a key to managing my illness. Over the years I've been conscious of my stress level and always made major decisions with that in mind. Stress isn't the only consideration when making major decisions. I became a stepmom and had twins, so I'm obviously open to adding some stress to my life. But in both cases the benefits are huge - I love being a mom and a stepmom.

When the twins were born premature my husband and I agreed I would stay home with them. Staying home can be a stressful job especially with twins, but I think it would be harder if I were working full time and juggling everything else too. For a long time I have wanted to change careers and not working has given me the perfect opportunity to do it. I've found a graduate program that offers part-time evening classes and is not far from my house. Classes start in less than two weeks. I'm really excited and about to find out if I can balance being a wife, mom, stepmom and student along with my rheumatoid arthritis. Something tells me I can.

Leave My Hair Alone

2008-08-14T16:52:00.000-07:00

Side effects are a reality of most medications. I've been lucky when it comes to side effects. I've had bone loss from taking prednisone, but prednisone wasn't ever supposed to be part of my long-term treatment plan. I do take extra calcium now to combat the bone loss, just as I take folic acid to help minimize the side effects of methotrexate. Unfortunately even with the folic acid I have had some hair loss. The first time I took methotrexate the hair loss seemed to stop after about a year or so. Now that I am back on methotrexate, the hair loss is back too.

I'm not going to lose all my hair, just some. Compared to liver damage, bone loss or stomach problems a little hair loss doesn't sound so bad. Really, what do I even have to complain about?

Well it's my hair! I don't want to see globs of it coming out. I just don't. It's not only troublesome because it's my hair and I'd rather keep it, but it's messy. It's all over my clothes. I'm constantly feeling it on my arms and I can't get rid of it. I feel like a dog shedding for the summer. It's all over the babies. They already liked to grab my hair and pull. But now even if they don't grab my hair, it ends up in their little balled up fists when I pick them up because it's all over me. It gets all over the floor where they crawl.

I know I can't change it, I have to accept it as a reality of my rheumatoid arthritis treatment. So I guess the only thing left to do is add "more frequent vacuuming" and "lint brushing the babies" to my list of things I do to combat the side effects of my medications.

We're home!

2008-08-09T17:53:00.000-07:00

I don't want to rate our return trip from Colorado. But if I were to use the rating system from our trip out to there - the first part of our trip (through the airport and onto the plane) would score "lots of room for improvement." It did not go smoothly, mostly due to my stress level. My foot was in terrible shape for the trip home and I'm sure that contributed to my crankiness and stress as well. Stress can cause your RA to flare and a flare can cause you to feel more stress. A vicious cycle.

Once we were on the ground the stress evaporated (although my foot still hurt terribly). We had an easy time getting our luggage. Everyone was happy and joking around during the drive home. We walked in the door and it felt like we had been gone a month. It's good to be home, but I'd turn around and go right back if I could.