Sunday, December 5, 2010

6 years ago this month our world changed with 3 words. Juvenile Rheumatoid Arthritis.

In December 2004 we were a typical family of 4 with a active toddler and needy newborn. Jordan was 2.5 and Matthew was just about 3 months old. Jordan adored her brother, I was getting into a routine with the kids and had pretty much totally recovered from the c-section. Life was good.

At some point Rick and I had noticed that Jordan would limp from time to time. It wasn't anything consistent but back in October we noticed she was limping while we were at a friends house. Looking back now, that's when it all began. Every Christmas Eve I make cookies. This was going to be the first year Jordan and I were going to actually bake them together. I got Matthew down for his morning nap and as I was getting things started I realized Jordan was walking really weird. After watching her for a minute I went and checked her over and asked if she fell or hurt anywhere. She told me no but after I saw her knee I don't know how we had missed something that huge on her.

I called Rick told him I was taking her to urgent care, grabbed Matthew and we were off. We saw the doc pretty quick and we were sent for x-rays. I was told there was no fracture and everything looked OK and that I should give her Motrin if she needed it. Her knee was red, hot and HUGE! How could it be OK?! But I believed him. On my way out I was told to follow up with our primary ped in a few weeks if there was still a problem. We went on with our Christmas as planned but by no means was Jordan ever 'OK' again.

We followed up with our ped and he repeated the x-rays and ordered blood work. This time I was told her knee had some fluid and that we should probably follow up with a pediatric orthopedic surgeon. OK, so something IS wrong. Our ped wanted us to be seen ASAP but the only ped ortho in the area was booked for 4-5 weeks so I took Jordan to another ortho in the same practice. He told us that she probably fell and would be fine. At this point she had had the swelling and had been limping for about 5-6 weeks. I noticed that the mornings were hard on her. She would call me to get her out of bed and bring her down stairs. She'd sit and watch TV or read books with me for a while then she'd start getting active. The same thing would happen after she woke up from a nap. We kept the appointment with the pediatric specialist because we knew something was wrong. Within seconds he told me she had JRA. Juvenile Rheumatoid Arthritis. After months of not knowing what was wrong with Jordan we finally had an answer and it wasn't anything we were expecting. I remember thinking, “She’s not even don't get arthritis. There has to be another explanation. My daughter does NOT have arthritis.” Dr. S wanted to do surgery to rule out anything mechanically wrong with the joint, to drain the fluid and take a tissue sample but he was sure it was JRA so he referred us to a ped rheumatologist as well.

Jordan had surgery a few weeks before she turned three, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. It took us 6 months to finally see the specialist who was going to help her. Six months after her JRA diagnosis we found out that she had uveitis, inflammation in her eyes. It's been a roller coaster ride ever since. She's gone from taking naproxen twice a day to having to take low dose chemotherapy weekly and having IV infusions every 4 weeks. The meds she's been on over the years are scary. They increase the risk if cancer and leave you with no immune system to fight off a simple cold. Jordan has had countless infections which left me scared not knowing if she'd be able to fight it or not.

I've spend the last 6 years educating myself and others about juvenile arthritis. I can't even begin to count how many times I've heard "Kids don't get arthritis." or "She's too young for that. My Grandma has arthritis!" I wish that were true. The type of arthritis Jordan has is an autoimmune disease which means her immune system doesn't know the difference between her own cells and a virus. It attacks the joints, connective tissue, hair, skin and organs.

I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but there are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. I know first hand how she feels because I also have RA. It's not just the disease that makes a person with autoimmune arthritis feel bad-- the meds and their side effects are awful. Imagine the flu times a million. You're close but not quite there. I would gladly take the flu over RA and everything that goes with it any day.

But, Jordan is amazing. She takes all this as it comes. I'm not sure how she does it because there are days when I just want to crawl in a hole and die. If she can can deal with this disease then I can too. She's willing to try anything and if it hurts she stops. She does her best to keep up with the kids at school and for the most part she does pretty well. I'm so proud of her and hopefully in time she will beat this disease.

Now if you made it all the way to this point I hope you've learned something. Kids can and DO get arthritis. Autoimmune arthritis is NOT the same arthritis we all will develop over our lives from normal wear and tear on our bodies. Yes, osteoarthritis is painful and can be just as devastating to a person but autoimmune arthritis affects the entire body. To learn more about the different types of autoimmune arthritis visit International Autoimmune Arthritis Movement (IAAM).

I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at their Facebook page. They have been posting several Scavenger Hunt items throughout the weekend and I am posting #9: Too Young to Have Arthritis. As I talked about in this blog entry, children who get this type of disease do not have the common, degenerative "arthritis" we so often hear about. Autoimmune Arthritis is severe and misunderstood. Every parent should be informed of what to look for.
So this leads me to your task for Scavenger Hunt Awareness Items for #9: To earn 10 Awareness points (that can be exchanged at the end of the online game for free Awareness merchandise), we would like you to repost this story on your Facebook page by copying and pasting the link from the browser. Please add to the title: Parents-please read this so you can be educated on this disease that affects 300,000 children, but is often overlooked early on as “an unexplained injury”.

But you must post in the next 10 HOURS to earn your points. To show it has been posted, simply copy the post onto a document, save, and email to
Time’s ticking!
*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis.

Tuesday, October 26, 2010


Tomorrow is a big day for the Peanut. First she needs to have some labs done to check her blood sugar. Her last 3 random tests have been high. I doubt she has diabetes but with it being on Rick's side like crazy, it would be best to know. So the poor thing has to fast for 12-14 hours. She's never had to fast before so this will be interesting.

After her labs she has a follow up with the ophthalmologist. I'm praying that her eyes are clear and she'll be able to stay on Humira. I have a feeling we're not going to be able to stay on it for much longer. Since her eyes came on so fast and so strong this time I'm sure they will do it again. I want her off the pred drops. We stopped them a few days ago so we'll see how she is tomorrow.

I started Enbrel on 10/14. I've had 2 injections and I think I may have some improvement in my swelling. I still have pain but the swelling in my elbows and hands is down. I can even wear my wedding rings again AND they're a tad bit big :) I did have a bad weekend and slept most of it away. Missed Bubby's game on Saturday, could hardly move yesterday and I have a wicked bladder flare going on right now. I have Interstitial Cystitis along with everything else. I know that is my own fault seeing how I had pizza and tacos over the weekend. So, I'm taking the bladder meds I have and I'm going to try to get through this flare without seeing a urologist. We can't afford more doc visits and more meds.

I hate being sick and having a sick kid. I just got a call from the school and it seems J's wrist is bugging her. She said it's a bit warm and crampy. Her stomach is bothering her too. Not what I wanted to hear today. We can't flare at the same time! Blah!

Tuesday, October 12, 2010

World Arthritis Day means......?

***I'm real late on this but I'm hosting some amazing friends who are visiting from out of state, I'm super tired, achy & swollen. And I just found out that I have RA myself. I was diagnosed with lupus first which wasn't the whole story. I'm finally seeing a rheumatologist that is going to help me. I'll be starting Enbrel this week. Wish me luck!***

If you belong to any active online arthritis community you've heard about WAD. The Arthritis Foundation and American College of Rheumatology (ACR) have decided that today will be World "Arthritis" Day. Too bad they are only focusing on osteoarthritis, (OA). When you hear the word arthritis you probably automatically think of OA, which is the type of most people have or will have at some point in their life. It's painful, can cause a lot of damage leading to joint replacements. I know that's how I was until the other type of arthritis, autoimmune arthritis, (AA) came and invaded our lives forever.

To learn more about autoimmune arthritis visit International Autoimmune Arthritis Movement

Jordan was diagnosed with JRA when she was just barley 3. We went 6 months of seeing different doctors, having different labs done, surgery to finally have an answer. Juvenile RA isn't well known. In fact, adult RA isn't really known or understood. When you tell someone you have AA, which is what I tell people J & I have, they look at me funny. When I go on to tell them about the treatments we need they question me or say, "Well, so and so has arthritis too and all s/he needs is advil or aleve. That may be true for OA but not AA. With AA the treatments include but are not limited to: NSAIDs, steroids, low dose chemotherapy, biologic drugs, physical and occupational therapy.

A few faces of arthritis

I'm all for arthritis awareness but I wish the ACR and AF were making a bigger deal about AA. IAAM is working hard to re brand the word arthritis. People need to know that "arthritis" isn't just something old people get.

"IAAM, the 1st nonprofit in history that focuses exclusively on the 7 Autoimmune Arthritis diseases, is asking you to participate in this global awareness event by forwarding and posting this newsletter and, if possible, purchasing one of the 3 awareness designs shown on the publication. These items can be purchased by visiting the IAAM website (The awareness designs range from $5-15 with 100% of the proceeds donated to IAAM to create future awareness programs)."

Sunday, October 10, 2010

A quick update!

But first, isn't she beautiful?? My baby girl has the most amazing eyes. Yes, I'm Momma so I'm allowed to say so :)

So, the inflammation is better but it wasn't totally gone when we went for our follow up a week after we noticed the flare. We're sllloooooowwwllllyyyyy tapering off the pred drops and we have a follow up again on 10/23, I think. Gosh, either J or I have appts once a week. They all run together....

She's doing better as far as (the minor) joint swelling and pain go. The Aleve twice a day is wonderful. I wish J would just TELL ME WHEN SHE HURTS!!! I understand not wanting to be different but I can't believe she keeps it to herself. Everyone knows when I don't feel good or hurt. Not that I go telling everyone but I do remind the kids sometimes the Momma isn't feeling 100%. Can't she do the same?

I see the new rheumy again tomorrow. I like her so far. She told me that my labs for lupus came back either negative or slightly elevated. However, it doesn't mean I don't have it. I have been on treatment for over a year now so that could be why. I got my records from my first rheumy who diagnosed me in July '09 and I think he's a quack! There are sooo many mistakes about symptoms I have/had and my bladder issues! Seizures is written as fever, which I get messed up in the dictation, but these are medical professionals and I expect better record keeping. I have lab reports from 3 different labs. I understand, I think. One lab stated that I am ANA positive with a speckled pattern, the other does not. One states I have APS. Rheumy tells me I have APS and I should start taking aspirin daily. I do, but there is no record of him telling me to do so in my records!!!! I don't understand any of it so tomorrow, I'm going to have a long talk with the new rheumy to figure out what exactly is wrong with me, what meds I need to be on and what I can ditch. It will be an interesting appt I think!

Thursday, September 30, 2010


Poor Jordan. Poor, poor Jordan. I think we're about to go round and round with the eyes again. 6 months after her JRA diagnosis her eyes joined it. We've had periods where she couldn't be inflammation free for more then a week or 2 then we added the biologic meds and she was doing OK. After about 6 months on Enbrel it stopped working and we went to Humira. She did great for a while, like over a year, and now her eyes are active again. Joints are too but I'm really worried about her eyes.

There is talk about Remicade. Don't want to do it but what other options do we have? Not many. We did up her metho as of 9/20 and we still have room to up it more if we don't see any improvement on this dose. She's also back on naproxen 2 times a day to help with the achy, stiff and swollen joints. We've only done 2 doses but Jordan told me today she feels better then she has in a long time. I feel bad because she doesn't tell me when she hurts. I have to pry it out of her and even then she doesn't want to take any meds. I guess hearing the doc say she needed to be on it again on a regular basis helped. So, we see the ophthalmologist in 4 weeks. In those 4 weeks before we see her we are tapering J's pred drops. Problem is, I know Jordan and her history of uveitis. J will be clear when we see Dr. T but a day or 2 later the inflammation will start again and I won't know it until we see the doc again. Usually Jordan can tell when she's flaring but this time it came on so fast and hard our family optometrist caught it. We've been running from doctor to doctor since the beginning of September and I'm tired of it. But this is the life of a mom with a family who has different medical issues.

I am supposed to see another rheumatologist tomorrow for my "second" opinion. I use quotes because my lupus has already been diagnosed but the new doc I saw a few weeks ago with our new insurance didn't believe I was really sick. So the day after I saw him I called to get in with another rheumy. I'm out of meds, I have a lovely rash on my face, I hurt all over, I'm totally exhausted-- took 2 naps today and plan to go to bed when the kids do- but I'm not sick. I went in for blood work and I've got a few results but the ones that will show, or should show, I have lupus aren't back yet. We'll see what happens tomorrow...

Is it bed time yet?!

Thursday, September 16, 2010

Am I sick or not?!

I saw a new rheumy today. I was thinking, I have a diagnosis so all he needs to do is go over my meds, take my history, examine me and just follow how I'm doing. Routine labs, med tweaking when needed. All the stuff I came to know and expect after I was diagnosed.

WRONG!!!! This guy doesn't believe I have any kind of auto immune disease. Yes, I am ANA+ but that can mean anything. I understand that BUT when I also have APS, inflammation of the blood vessels, AKA vasculitis right?!, anti thyroid antibodies, high ESR, seizures, massive hair loss, a rash on my face (& chest), sun sensitivity, virtually NO vitamin D in my system at all and Raynaund's how can I NOT have an auto immune disease?! Did I mention the debilititing fatigue?! I didn't? Well that is a huge part of my life, just ask my kids...

HELLO!!!!! Are you a doctor or what?! Even a first year med student would be able to tell that something isn't right with me. This guy told me all the meds I'm on were to treat different things. No kidding. I have several different problems. The MTX, plaquenil, prednisone & folic acid are for my "so called lupus or connective tissue disease." I use quotes because that's what he did. I'm on others for pain, depression & sleep. Ummmm.... I'm on nothing to help me sleep. I was told that these meds ***might*** help me sleep and of course they don't. Yes, I'm taking an anti depressant because it helps prevent headaches and it's supposed to help with chronic pain. I'm on *I don't remember the full name*pam to help with the seizures & twitching I'm not having. Apparently, the episodes that my entire family and my neurologist witnessed didn't really happen. If they didn't happen then why on Earth was I in the hospital for 5 days 2 years ago and why was I flopping around on my bed like a frickin' fish out of water just a few months ago. Can you see my eyes rolling yet? Oh I'm an attention seeking hypochondriac. Got it. My pain isn't real. The swelling isn't real. The fact that my blood wants to stick together and make lots of clots is something *I* made up in my head. Sure thing. I had never heard of this stuff until July '09 when I was diagnosed with lupus and all this other crap. But I don't have lupus according to this doc.

I'm moving on. This doc didn't examine me. He didn't see me try to get out of the chair, try to walk or anything. He didn't see my swollen hand and I guess he didn't see my face. See I'm tapering down from the pred because I've been on it for about a year now and when I taper down my body doesn't like it. I tend to get this red rash on my face & chest. But I guess that's all in my head too. Oh wait... I have pictures of myself with a red rash. I must have photoshopped them so I'd look like I have lupus. Ya know, I have nothing better to do with my time then to make up these medical issues. Eye roll again. Did you see it this time?

I'm calling tomorrow to cancel my next appt with this guy and set one up with another rheumy. I'll get my previous labs, I didn't have a chance to get them before now because this appt came up so fast, and I'm getting a new set done. I don't know what they're going to show seeing how I've been on treatment for over a year now so it would be one more thing to prove that this doc is right and I'm perfectly healthy. HA!

My husband and I have been together for over 20 years. I'm 36. I've been in pain and sick for over half of my life. He's seen me go from bad to worse. When I was 14 I had a bone scan done. They don't just inject radiation into a child unless they're looking for something. They never found what was wrong and at that time my parents didn't know whatelse to do with me and they didn't push for an answer. I've been looking for one since I was able to make appts for myself and not need my parents consent for anything. And finally I thought I had one. J'd ped rheumy believes I had reactive arthritis when I was a teen, which now I believe that too based on the research I've done.

I know too much now. I know I have some type of auto immune arthritis and I'm not about to let some quack make me feel like my symptoms and pain aren't real. I'm not lazy and I'm not crazy. I'm sick.

Monday, September 13, 2010

Life has changed for us

My heart is broke and it hurts like you wouldn't believe. I've spent the last 18 months caring for Granny. She's been gone for 3 weeks and it still hurts like she passed yesterday. I know this is for the best and she's no longer in pain but I am.

My days are empty now. Kids are in school and I'm alone. There are a million things I could do but I can't. I've been sick for 2 weeks. My stomach is a mess. I can't eat. It's not that I don't want to because I do, I'm starving, but when I do it hurts. I've lost weight, I'm depressed, flaring and miserable. I miss the way our life was just 2 months ago. Everything can and did, change so fast.

I hate cancer and I miss my Granny :(

Friday, August 20, 2010

Can I have a little breakdown please????

Cancer sucks.

We're sitting here watching one of the strongest women I know suffer through her final days. Not once over the last 17-18 years of fighting did Granny complain. Breast cancer, colon cancer then breast cancer again. This time it metastasized to her bones. She fought hard and for the most part was kicking butt until it went to her bones. Since then it's been awful. She tried different treatments to keep it from spreading but whatever it was that she took at the beginning of the year just made her so sick she decided she was tired of fighting.

The last few months have been hard. She was pretty much bed bound. We finally got her to agree to stronger pain meds and we saw an improvement in days. So much of an improvement that we were able to go to the Aquarium just a month ago. It wasn't Sea World, which is where she really wanted to go, but we were able to test the waters to see how she'd do out for a few hours. 2 days later she had me looking into Sea World tickets and hotels because she felt she was strong enough to go. Just a few days after that she broke her collar bone by reaching for something on her bed. I was up with her all night because she was in so much pain but at the time she didn't tell me she heard a "pop!" She assumed it was the cancer so we got some morphine and she rested a bit. When she finally told me she heard the pop, I got her to the doc and we found out it was broke. From there it's been hell.

J and Matthew started school a week ago yesterday. Thursday night they spent a little bit of time with Granny telling her about their day, their teachers and just how their first day was. Granny was alert, gave the kids hugs and kisses, told them she loved them & to have a good day at school and off to bed they went to bed. Rick got home late that night and noticed Granny was falling asleep sitting up. She was slowly sliding off her bed. He picked her up and got her into bed. He decided to sleep downstairs because he was afraid she'd fall.

Friday everything changed. I checked on her several times before we left because she LOVES her coffee and often will have a cup or 2 while we're getting ready, say goodbye to the kids then go back to bed. She never woke up. All day rick and I would go to check on her and she was asleep. She'd get up to use the bathroom but by time we got back in there to see if she needed anything, she was asleep. No coffee, no chips, no nothing. All she did was sleep. She finally woke up long enough to eat around 8PM. I got her dinner, she ate a bit and by time I went back in to see if she wanted anything else she thought it was late and time for her night meds. She had lost all concept of time and didn't realize she slept all day.

Saturday morning she woke up went to the bathroom, stood up from the toilet and her leg snapped. Thank God I heard her calling Rick. He rushed down, I followed then called 911. I knew she wasn't coming back home.

I'm a mess. Physically, I hurt. Every part of my body hurts. Emotionally.... I think I need to go back on something to help me get through this. I've weaned myself of all anti depressants but I'm snapping at the kids over stupid stuff and I'm depressed over all this. I need to hold it together for the kids and right now I'm not doing a very good job of that. I just want to sit in a room alone, stare at a wall and cry. I'm tired, I'm not eating and I'm not taking my meds. It's not intentional. I just have so much on my mind and I keep forgetting. And I'm 2 days overdue for my MTX. I'm pretty sure I'm out of a few things too....

I want all this to be over with. I want Granny to go peacefully but being the fighter she is, she's fighting. For some reason she's not ready to go. We've been told for a few days now, she won't make it through the night but she does. Then it's, "she'll slip into a coma and it won't be long after." You've been telling us this all week! She's obviously not the normal person when it comes to this. She's already lived longer then the doctors expected. We're ready for her to go. I want her to be realize it's OK to go and that we're OK.

Monday, August 9, 2010

Pain meds are our friend!

I don't know how many people are like me but I hate taking medication. Since I have lupus, I don't really have a say in the matter anymore. I have to take meds in order to keep my disease in check. It doesn't mean I like it but if I want to have a 'normal' life I need to. There is one medication that I do have control over. My pain meds. I avoid taking the good stuff and usually try to get by with Motrin or Advil. There are days when the OTC stuff just doesn't cut it and today was one of those days.

I don't want to become addicted or dependent on Rx drugs but the reality is I AM dependent on them. There is a difference between the 2. Addiction is where you will do anything and everything to get what your body craves. I depend on percocet or tramadol to get me through the bad days. I depend on it to help me function just like I depend on my husband and other family & friends when I'm flaring.

Anyone who knows me, knows that I'm not an addict. I've never done any illegal drugs and I rarely drink. It's just not me. That's probably why I have a hard time taking my good stuff. I was afraid of becoming addicted to narcotics. Obviously, I have a need for them and if my doctors thought I was an addict I wouldn't be getting the Rx. If I were an addict I'd be popping pills like they were candy. But I wait until my pain is so bad that I'm miserable before I take something. How many others do the same thing?

Some of you know that our family lives with my husbands Grandma. Over the last 20 years I have seen this woman survive breast cancer. Then colon cancer. In 2007 she found another lump. We assumed it was scar tissue since it was on the same side as the breast cancer from years before. The biopsy came back and it was cancer again. She began treatment again only this time it wasn't working. The cancer spread to her bones. Her spine, shoulder, skull, pelvis and sternum are all involved. Last August she fell and shattered her elbow. Three weeks ago she was reaching for something and broke her collarbone.

This woman knows pain. Like me, she doesn't like taking pain meds. A few weeks ago she was so miserable. She couldn't get comfortable and was up all night. Her nurse came the next day and said "Pain meds are our friend! You take them when you need them. That is why we have them!" Ever since then Granny is taking her meds regularly and she has been feeling much better. We adjust meds as needed so she's comfortable.

Why do I think I'm different? Why do I have such a hard time taking that pill that will make me feel better? Pain is pain. It makes us grumpy unhappy people who don't enjoy life. I don't want to be grumpy all the time and not enjoy my kids.

So, I need to remember that pain meds are my friend! Do you?

Tuesday, June 29, 2010

How am I NOT bald?!

My hair is falling out. Well, really it's been falling out for over 3 years. Like this, every. single. day. And this is just what I took a picture of in the morning after a shower. This isn't including what was lost IN the shower or what will come out when I take my hair out and brush it tonight.

**I'll tell you now, this is long. It's my "how I was finally diagnosed" story. Feel free to move along. I won't be offended :) **

I think April /May 2007 is when things began to get get worse for me. I've had medical problems all my life ranging from hip, knee, ankle "sprains" & brusitis to girlie issues, frequent UTI's, strep infections and so on. Test after test, CT scans, bone scans, physical therapy, x-rays.... blah, blah, blah. Nothing was ever found. Nothing.

But, I started Lupron Feb. 14, 2007. Yes, I remember the exact date. I could probably even tell you what I was wearing if I really thought about it. I was desperate to find something, anything, to help my pelvic pain. I had been on pain meds for years, seen who knows how many GYNs, had laparoscopic surgery, Oct. 31, 2006, then was told "I didn't find anything but adhesions. There is nothing more I can do. You need to see a psychologist and a pain doc." And with that I found another GYN. This one actually tried to help. He suggested I try Elavil. I did that for a while but it didn't help. Then he mentioned Lupron. He thought that maybe I did have
endometriosis but was missed. After a lot of research and debating what to do, we decided I needed to try it. I couldn't function most days. I had maybe 5 or 6 "good" days a month. By "good" I mean I was able to get by with Advil or Motrin and not Darvocet. Lupron puts you into menopause. Hot flashes, mood swings, night sweats, dizziness and my very first migraine!!.... the whole bit. It was supposed to stop my heavy bleeding but it didn't. I was on it for 2 months, did 2 injections, and I was miserable the whole time. My entire body hurt. Kinda like now. I couldn't do it anymore so I stopped. I was depressed and began to think that maybe I was crazy and possibly, it was in my head.

My GYN sent me to a specialist at UCLA. Thinking I was FINALLY going to get an answer I was happy. WRONG!!! She told me I needed to do 4 more months of Lupron, HA!, and that I possibly had adenomyosis but that would be up to my regular GYN to decided if a hysterectomy was really needed. She never saw me again. She wanted me to restart a drug that made me miserable. She didn't care how I felt while I was on it, in her opinion, I didn't give myself enough time to work. OK, I was anemic from blood loss, I hurt, I almost passed out while cutting J's b-day cake that year and I was MISERABLE but yet, I needed to go back on the drug. No thank you.

So I dealt with the pain again and thought I was crazy. Until Sept. 2008 when the seizures started. I saw my primary doc, Dr. T, and he sent me to a GYN who would do a hysterectomy. Dr. T thought maybe I had fibromyalgia and it was worse in my pelvic area. He told me not to be surprised if once I had the surgery I began to have pain all over. Well, I did have pain all over to begin with but it was worse in my uterus! I had my surgery on Oct. 30, 2008. I missed another Halloween with the kids :( and my Peanut was so sick. I almost left the hospital because I knew something was really wrong with her... I had that Momma gut feeling and I hated being so far away from her. I was released on Sunday, took her to the doc on Monday. She had pneumonia.

Went to my post op and pathology showed I had adenomyosis. I WAS NOT CRAZY!!! I came out of the room giddy. I remember opening the door and telling Rick I wasn't crazy... there really was something wrong! I felt so vindicated. I wanted to call every GYN I ever saw to tell them. Ha ha! I was right!! But, I still had pelvic pain...

Anyhow, we moved back to SCV a few months later. Found a new doc for the family. Our new primary doc is awesome. I saw her in April 2009, once we were settled, and went over my entire history with her. She realized something that a quite a few doctors had missed. My daughter has JRA & uveitis flares. Autoimmune diseases. Oh wait... I have a sister and a cousin who also have autoimmune diseases. Hmmmm..... maybe I have an AI disease as well.....

We all now know that I do. In fact, I have 4.
I have lupus, APS, Raynaud's disease and in addition to the adeno, my pelvic pain is caused by interstitial cystitis. It's possible the Lupron triggered all this but I don't think so. I've been sick on and off for most of my life but maybe the Lupron finally triggered something in my body that made the the blood tests show that something was really wrong. I'm not happy about being sick and having to take 20 medications but now I know what's wrong. I didn't give up. I almost did and there are many times I wanted to die because I hurt so bad and no one could tell me why. I was afraid I'd never having an answer. So even with those years of being bounced from doc to doc and taking that horrible Lupron, I'm thankful. I believe the med triggered my body to start producing enough antibiodies (to myself) to show up on tests. I have to believe that Lupron did something good for me ;)

Wednesday, June 23, 2010

Blankets & Afghans

Baby blankets & afghans:

These are just a few of the blankets I have made. They can be made in any color and size. If you are interested in something let me know.

Round Ripple


Box Stitch

Granny Squares

Monday, May 31, 2010

Upped again...

Well, I'm still waiting to see if methotrexate is my wonder drug and so far it isn't looking like it. My doc upped me again and I'm almost at my max dose. Not sure what would be next considering I started on Plaquenil to begin with. I'm not sure what else is used for lupus so I will be doing some more research.

Our insurance will be switching come September and we will be seeing all new doctors, again. Seems like we go through this every few years. We finally found doctors we like and we'd love to stay with but the monthly premium would kill us if we stay. If I were working, we might be able to do it but that isn't possible right now. I'm really going to miss J's rheumy more then anything. Dr. B has been wonderful and she's done so much for us.

If you've never read The Spoon Theory, you should. Several times over the last week I've heard "But you look great!" And every time someone said it I thought "if you only knew..." A few weeks ago I was covered in a rash. My face and chest were red, bumpy and itchy. Then it was dry and scaly. The seizures started again and I was in a full blown flare. For weeks I was blotchy. My meds were upped, THANK GOD for prednisone! Yes, I just said that, I have a love/hate relationship with the stuff and within a few days I did start to feel better. I'm trying to lower my dose again and it's been rough. This past week has been hard on me but it was totally worth it. You'll see why very soon :) So, I've been adjusting my dose and we'll see how I do. Tomorrow I plan on doing as little as possible and letting my body rest. Everything hurts today.

Anyway, my point is, yes I have one, the reason I look "great" and not sick is because of my meds. I take 20 different medications right now. 20!! It's a lot. I can't even tell you how many pills I take a day because *I* don't want to know. I am sooooo thankful for each one. Without them I would look sick or I may not be here at all.

Friday, March 12, 2010

New crochet projects, J's needs glasses and Bubby got an award :)

This is going to be one of the hardest projects I've ever tried. Any guesses on who it's for??

I'm also working on another afghan and I think I'm going to try a hat soon. I've stayed away from making anything other then afghans and baby blankets because I'm afraid of messing up. I've made both kids scarves but I didn't follow any pattern. I just made them. I am going to make scarf for Devin and follow a pretty cool pattern I found. Hopefully I don't mess it up too bad.

Jordan had an eye exam yesterday with our regular optometrist. She's far sided and had an astigmatism like the rest of us. Big surprise there. We'll go this weekend to order her new glasses. In July we'll be able to get her new Rx put in her pink and black frames. Our vision insurance is weird. We can only get frames once every 2 years and lenses once a year. Since she got her reading glasses in July we need to wait until July. Good thing Walmart and Target have cheaper frames and lenses. Any parent who had/has a child who wears glasses knows how they get lost or broken once every few months. J sat on hers this week. Thankfully when the optical tech was able to fix them for us yesterday :)

Matthew for an award for effort a few weeks ago. His teacher said he's very bright and he's bound to do "big things" in life. He's fascinated by space and science. He can tell you things that a normal kid his age would have no interest in.

And I'm going bald. Maybe not bald but my hair is really thinning. It's been falling out for about 3 years now but it's getting worse. My doc says it's from the inflammation in my body but I'm sure the methotrexate isn't helping. Since starting the injections my nausea has gotten better. It was still there but I doubled my folic acid and it's pretty much gone. I still have my moments but it really much better then it was. I'm still tired and could probably sleep a good 12+ hours a day. I guess it's all part of the disease...

Sunday, February 21, 2010

Shot night @ the Howe house

I'm beginning to hate Sunday evenings. J and I do our MTX injections. This week was my second shot. Jordan is a pro at this but not me. Mine sting! J keeps telling me I'll get use to it so maybe?

She doesn't even flinch!

Wish I could say the same!

I hope one day we won't need these shots...

Wednesday, February 17, 2010

How is summer going to be?

For 5 wonderful years we lived in Ventura, just 5 minutes from the beach. We were there as often as possible. I'd take the kids to Marina Park to watch the sunset and play before Rick got home. The kids both caught their first fish off Ventura Pier and in the beginning of all of Jordan's issues we'd take her fishing after her appointments. It was something she wanted to do.

Now that we're back in SCV we're about 1 hour from the water. It's not bad but it's not like we can just up and leave for an hour or 2. Now it's a day trip. Last summer I was sick. We never once made it out to the beach. I was too tired or I hurt.

I'm not supposed to be out in the sun. The UV rays can trigger a flare which makes me miserable. Both Jordan and I are on meds that make us burn very easy. I am anal about putting sunscreen on the kids but I often forget to lotion up myself... or maybe it's just denial that the sun hurts me too. Matthew needs to learn how to swim. I want him to learn this year. I want to take the kids out on the bike path and ride everyday like other families do.

How do I do these things when even the simplest things like going to the market wear me out? Even putting away yarn from projects I've finished made me want to nap. How do people with extreme fatigue and pain function? Going to church for a few hours once a week takes a toll on me so how am I going to keep 2 kids happy when they're on vacation this summer? It's not fair to them to sit around all summer and be bored.

Not sure what the point of this is but I've been wondering about this a lot. I guess at this point all I can do is pray that these meds help so we can be a "normal" family again.

Sunday, February 14, 2010

Recent crafty type stuff (IMG HEAVY!!!!)

A few blankets and cakes. I'm working on a few other blankets and I've made both kids a scarf. My hands have been hurting so I'm not able to work on things as much as I'd like. Hopefully if/WHEN the meds kick in I'll be able to crochet daily again. It calms me and I really miss it.

This was my Grandma's birthday cake. We had a big party for her in September. I honestly think she knew where she was and who we were.

Matthew's 5th birthday cake. An ice cream cake made by Mommy :)

And here are a few recent blankets. I've made a total of 5 of the Spiderman ones. The kids LOVE them!

And this... This was made for me when Rick and I were still in school. That means I've had it for almost 20 years. And people said we wouldn't last....

Friday, February 12, 2010


We've all been sick and it's not fun. I've been having flares here and there and feeling not so hot. My MTX makes me sick so I'm supposed to start injections this Sunday. WOOHOO!! J thinks we're twins now! I'm not looking forward to it but I know how much they've helped her so I'm willing to try. So, Sunday nights J and I will line up for our shots. I really hope this help with my nausea.

Matty had a check up with his ENT and his tubes are still working great. One less thing for me to worry about :) J sees Dr. B on Thursday and since her labs are still looking good we *might* be able to start weaning her off some. That would be awesome but I'm not getting my hopes up. Eyes have been 100% clear for a year now. That is amazing. I thank the Humira for her sight :)

Rick is now a certified EMT. He's applying with AMR so hopefully soon he will be out of FedEx. The only down side to this is the fact that we will be without insurance for 90 days. We will try to get COBRA but that will be expensive. If we can't, I guess we'll be paying for our meds out of pocket. That is scary but we'll do what we need to do!