On Vacay

I just felt like blogging because I am so down. It is so therapeutic to blog. Right now I should be pretty happy, but I am down and don't know if I will ever be up again.

I don't see my family nearly enough. We are in Tennessee and it is the first time I have seen my aunts, uncles, cousins, and even my mom in a long time. I have felt pretty well physically (except for during the long car ride from Texas-that caused mucho pain!)

So why in the world should I be so unhappy?

It's my marriage. It's very much on the rocks. It has made this trip really bad for me. I have cried so much and I have not been able to enjoy my relatives the way I should.

I'm trapped in my marriage, though, for many reasons.
1. My kids---I don't want them to have to change schools, lifestyle, and step-brothers. They are very happy here.
2. I have no job. He made me quit a job I loved at a school I loved. It made sense at the time and I honestly enjoy being a stay at home mom. But---I have no income from being at home.
3. This damn arthritis. I seriously don't know how I could work full time and be a single mom when I feel the way I have for the past 12 months. I hurt so badly when I have a busy day and I can't even imagine the fatigue I would experience. Ugh.

I try to "grin and bear it" for my kids. I love my husband at times and he makes me laugh....however, he is not real supportive of my condition---in fact, I really think he resents me because of it.

I will figure things out eventually, I suppose. It's truly scary feeling suicidal. I want to enjoy life again. I want to be happy.

On another note: my sister, who has had psoriasis for a long time, took one look at my skin lesions and easily identified them as being psoriasis. I guess I need to go to the dermatologist. If I am diagnosed with psoriasis, I will officially be diagnosed with PSA. Not that it really matters, but a name will make me feel validated in a way. "Undifferentiated Spondylarthropy" seems so......nonspecific. When anyone asks me what I have, I hate telling them. All I know is it is real---my rheumatologist knows it is from my bone and joint scans---and it would be nice to finally have a specific diagnosis.

Thanks for letting me vent, my blogging world friends.
Hugs,
Beth


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Quality of Life

It has been a horrible couple of days. My pain level has been a 10 plus. I'm taking 2 pain pills a day and feeling guilty about it. I hate that. Why should I feel guilty for wanting a couple of hours of being able to function? I get so tired of hearing people talk about how dangerous pain meds are. Honestly, I think it is much more dangerous for me to feel nonstop pain all day long. It has been almost an entire year and I miss my old life!

My left big toe is getting worse. It now pops loudly when I move it. It's painful and actually freaks me out a bit. I definitely can't wear shoes still. My knees hurt a lot more than they used to as well. My middle back aches if I go too long without resting and it's been difficult to keep some of my fingers straight lately. (ugh)

My skin is a mess and I have progressively gotten more and more into the habit of picking it. It's dry and flakey and I pick it when I'm not thinking about it (ie while I'm reading/driving/editing photos). I'm pretty disgusted with myself.

So, yeah, my quality of life is pretty miserable. I want to be a good mom and wife, but I feel as if it's not happening. I go back to the rheumy in a week. I'm not sure what is going to happen, but I figure an adjustment or change in meds is probably in my future. I am terrified of methotrexate, but I will try anything at this point.

I hate complaining, but I need to vent. It's either vent or bawl my eyes out....



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What's the Deal???

I've been avoiding posting because I'm so sick of whining.  Ugh.  I feel like that's all I do anymore.  I hate it.

I went to the rheumy on Monday.  I had a noon appointment, but didn't get in until 3:30.  Oh well....this doctor is worth it.  At the time, I had had about 3 good days.  When I say good, it means the pain was probably about a 4 most of the day and I didn't need to take a pain pill at all.    He upped my dose of alzulfidine to SIX a day (gag) and he did a chest x-ray.  I had been having some pretty bad chest pain in the upper left part of my chest.  He listened to my lungs and they were clear, so we'll see what the xray shows.  (I will call for those results Monday)

Telling the doctor I was doing better must've jinxed me because the past few days have been HORRIBLE!!!  The pain in my knees is so bad and I'm stiff all day long.  I walk super slowly and I feel miserable.  I don't know what happened as the weather has been nice and I've been taking my meds.  All I know is it really sucks. 

I know my husband is so sick of me.  He doesn't even ask how I'm feeling anymore.  He has even mentioned that I might be using the pain as an excuse not to go out.  I would LOVE to feel well enough to go out!  I really hate being at home all the time.

Unfortunately that's my update.  I'm trying to stay positive.  I'm trying to be happy.  But I'm not.  I'm depressed and down and really worried that I'm never going to be pain-free again. 

WOW!!!

Hello everyone!  Today is a very important day.  Today is the first day since last July that I have had NO joint pain at all!  The day isn't over as it's 4:30 pm, but I think this is a good sign, don't you?

I went to the rheumy on Monday and all my blood work looked good, so he upped my dose of azulfidine.  I am now taking 4 a day.  I've decided that two in the morning and two at night is best for me. 

So...today WOULD BE a perfect day, however, my stupid stomach is a mess.  I'm nauseous and my tummy is super rumbly.  I'm resting right now in hopes it will get better.  I want to enjoy the day.

I'm having some girl issues.  I'm not going to go into detail with those issues because I'm not so sure they are important (or truly issues) at this time.

I hope everyone is doing well.  Enjoy your day!

It's been a while....

I'm so sorry for not updating, but quite frankly I've been so depressed lately that it's hard to get the motivation to do anything. 

The Plaquenil didn't work for me.  It caused me to develop a bad rash all over my body, especially on my arms.  So...I went to the doctor, got a shot of something, and stopped taking the Plaquenil.  A week later, I started Plan B:  Sulfasalazine.  The doctor has me taking 1 pill a day for a week, 2 pills a day for the next week, and 3 a day the third week.  After that, I go in for blood work. I guess SSZ sometimes affects blood counts.  


Meanwhile, I am on a Prevpac for the h.pylori.  It really bites as it is 4 pills in the morning and 4 at night for 2 weeks.  


I don't know which of these is responsible for it, but I'm getting the most awful taste in my mouth a few hours after taking the medicine.  It's kinda metallic-y.....it's gross.


Anyway....depression has kicked in BIG TIME for me.  I'm truly struggling.  I feel alone and worthless right now.  Thoughts of suicide are becoming more and more frequent.  I don't know how long I'll be able to continue to go on the way things are going in my life.  


I'm really lonely right now.  Wish I had friends in town who understood what I'm going through.  I wish my husband understood.  I feel like I'm on an island and I don't like it at all.

Update...After Almost Two Weeks on Meds

It's been a while since I've updated and that's because...frankly....I feel like CRAP.  I guess the medication doesn't agree with me very well.  I feel nauseous a lot of the time and have a lot of stomach pain.  I've been extremely tired-to the point it's hard to function-and that's no fun.  Also...the pain has been very bad.  Most days it's around a 7, but I have had several days of 9-10 pain levels.  The pain is still in my arms and legs, but the worst in my foot and now my knees are really starting to hurt. 

I have an appointment to see my GP next week about the h. pylori infection, but other than that I am just waiting for the Plaquenil to start working. 

PLEASE let it start working soon.  I am barely functioning right now.  I'm missing out on life and I hate it.  I can't go on like this.  I'm so miserable.

Houston We Have A.....

DIAGNOSIS!!!!

I got in to see my rheumy this morning because my pain the past two days has been HORRIBLE and they didn't want me to have to wait until the 19th.  He has diagnosed me as having Undifferentiated Spondyloarthropathy.  I can barely pronounce it, but it's what my doctor thinks I have.  I will from here on out refer to it as USpA.  You can read about it here, but basically I get the impression that it's a seronegative (meaning I don't have the positive rheumatoid factor in my blood tests) rheumatoid variant arthritis.  It is chronic, but seems to be fairly easy to treat.

I'm now going to be taking a drug called Plaquenil twice a day.  It's a slow-acting drug, but it's the "least toxic" of the drugs we can try, so we'll start with it.  I might not see results for 2-6 months.  (ugh)

He saw a lot of inflammation in my scans and I also have osteopenia (so I will be taking Caltrate).  I have a vitamin D deficiency so I'll be taking lots of vitamin D for a while.  I will continue to take the Lyrica three times a day, Arthrotec twice a day, as well as that stomach medicine that I can't ever recall the name of.  Oh...I also have an h. pylori infection that I have to go see my GP to get taken care of. 

LOVELY, eh?  Should be a fun journey.

But at least I have an answer.  And a plan.  And I'm going to take a nap now.

Thank you for all the support.  It means the world to me!!