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View Full Version : Baaaaaaaaaaad Week!



onpointe
05-10-2008, 08:03 PM
Hi All!

Ok, so I just spent forever writing you about something that happened and when I went to preview it got lost and I had to log back in! It looks like it didnít post so Iím going to write this in Word and paste it so if it is out there somewhere and this looks like a similar post, I apologize in advance. J

First let me say how glad I am to be back with my fellow lupies (thatís what I lovingly call you to my hubby). J I have missed you soooooooooo much and really need to talk to you!

So I had something bad happen to me and it couldnít have been at a worse time, my mom, step-dad and sister are back east (Iím in Oregon) for a funeral, my best friend was in Texas for some medical tests for three weeks and my dad and I arenít getting along (thatís another story, blurgh!)

OK, to start with, Iíve been really stressed out lately for many reasons and decided to start seeing a therapist about a month ago just to help manage my stress and some other issues, sheís great by the way and has already diagnosed me with PTSD and get thisÖadult ADHD which I didnít see coming and if you knew me, you wouldnít have either! I guess the symptoms are different in adults than children. Anyway, Iíve had a lot happen lately, I think I told you all about the remodel from hell, then we re-homed a bunch of our cats and had to put a couple of the older ones to sleep, we also re-homed our dog, again, so thatís all been hard, Iím down to two cats and it feels weird! One of the reason we re-homed so many (seven I think) is b/c they started showing behavior issues, like peeing on my carpet and couch so we had take the carpet out, we put wood floors in and got new couches, leather, then one of the two remaining cats got sick with a urinary infection and peed on my new leather couch, my husband threatened to move out, he didnít mean it but he works so hard to provide for us just to have everything ruined, I donít blame the poor guy! Oh and the catís are so stress due to all the changes that we had to put them both on prozac! Iím getting ready for my SSI to go to court, we are in the middle of a heated custody case, we are trying to get custody of my 13 yr old step-son (which I hope we get), money troubles, etcÖThereís more, I just canít remember it all right now. Anyway, we have a lot on our plate (we all do) so Iíve been having like one big nonstop flare. My rheumy took me off the Plaquenil and decided to put me on Methotrexate, he said it was my last hope to get my Lupus under control. I canít take steroids, he doesnít think the Plaquenil was working so this is it I guess. The one big problem is that I have NASH or fatty liver and the Methotrexate could put me in liver failure but my doctor thought it was worth the risk. He told me that there are few side effects but that the big ones are nausea and hair loss, which I was really upset about because I already deal with nausea too much and my hair is really my only beauty I have left (gained lots of weight since Iíve gotten sick.) Oh, and the literature that came with the meds said the same thing about the side effects. As some of you know, you only take this medicine once a week, so for the first two weeks I was on a half dose, then a full dose each week after that, I took it for four weeks total. The last dose made my skin, nails and eyes turn yellow for about two days which is bad but nothing compared to the other side effects I was havingÖ

Shortly after I started the meds, my family and friends started noticing some behavior changes, I would start crying for no reason, sever mood swings, deep depression, sleeping a lot, stuff like that. I guess I didnít notice as much as they did but I started to feel very fragile and like something was wrong. Anyway, this last Monday I got up and started doing my regular stuff, while I was making the bed I heard this happy little voice in the back of my mind say ďhey wouldnít it be a good idea if you just take every pill you have, get back into the comfy bed and just go to sleep forever!Ē It sounded like the best idea Iíd EVER had!!!!!!!! It was such a strong urge that I can only compare it to a feast being set out in front of a starving person! It took all that I had to call my husband and tell him instead of actually doing it! I was so upset about having those thoughts, I just started praying to Jehovah and honestly, the only thing that made me call my husband and not take all my pills was this one thought ďI canít do this to Jehovah, it would hurt him so bad!Ē thatís it, itís weird, I didnít think about my family or anything. So my husband called my friend to come over until he could get home. Once they got here they called my doctor and my therapist, my therapist call back right away and said that those meds can really mess with your head, she told me to drink lots of cranberry juice and herbal tea to try to get the meds out of my system faster, she also told my husband to stay with me all day, he and my friend did. I think my husband felt way out of his league on this one so his way of helping was to do ďhoney doísĒ. Oh and my therapist told me to increase my anxiety meds, I went up and down, back and forth all day with my thoughts but was safe with my husband home. Well by about six that night I got hungry and asked him to get takeout and by nine I was starving so we went and got something. Then when we sat down to eat he picked a little fight with me about the remote and some stupid car show I didnít want to watch. Any other day it would have been no big deal but that day, was he seriously going to pick a fight with me???? After that something inside me snapped, I just had a total mental melt down! I donít remember all of it but I threw my plate across the room (a glass plate) and when it didnít break I got up and smashed it into about a million pieces! I then walked and sat in it screaming and crying ďsomething is wrong with me!!!!í I was pretty cut up and so freaked out, my husband called 911. The police showed up with the paramedics and the police officer asked me if my husband had hurt me because there was blood all over me and everything else, it was in pools on the floor! So they took me to the hospital and gave me a really strong sedative which helped lots. Thank goodness my wounds werenít too bad and I didnít need stitches but I did have to get x-rays to make sure glass wasnít embedded in my feet. The ER doctor even said that those meds can cause MAJOR mental issues and suicidal thoughts, itís like everyone but my rheumy knew! Blurgh! Then one of the elders from our congregation came in (we donít have ministers or preachers, we have a body of elders that oversee each congregation) when I saw him I just burst into tears and he was so wonderful! He just hugged me and held my hand and listened. He was so compassionate! He prayed with me and my husband and just made me feel so much better, I am so grateful for my spiritual family! He really wanted my husband to get the point that this was very serious and he said something like, if your wife didnít have such a strong relationship with Jehovah God, sheíd probably be dead. He was totally right! My husbandís eyes got so big when he said that, I think it was good that he tried to really impress upon my husband the severity of the situation because at that point I felt like an egg that could be broken so easily! So they released me, my feet felt like hamburger and still do a little but we went home at about 3:00 AM and we both slept until about 2:00 PM. Then we went to see my therapist who really made it clear that it wasnít me wanting to kill myself, it was the meds. She was so right, let me just say this, I have NEVER thought about suicide so this was very out of character for me, it had to be the meds. She also thought it would be a good idea if I wasnít left alone all week so my husband was with me Monday and Tuesday then my very wonderful friend spent the rest of the week with me. Oh, did I mention that the doctors told my husband to lock up my meds and take my car keys away from me, now that Iím feeling better it seems a bit funny but probably a good idea at the time. J

I am feeling better, I still feel fragile but Iím on the mend. The meds should be getting out of my system pretty well now. I tried to keep this mess from my mother because sheís half way across the country and I didnít want to worry her, I planned on telling her when she gets back but when she called to check in on Tuesday her mommy instinct kicked in, she immediately knew something was wrong and wouldnít drop it until I told her what was going on, so I did. Sheís ok but I can tell she wants to get home. J

Well, I know that was pretty personal but I just felt like I needed to talk to you all about it, I could use all the support I can get right now. J

Thanks for listening, my fellow lupies. ;)

onpointe

sits_inthe_corner
05-11-2008, 01:21 AM
Gentle looooooooooong hugs to ya onpointe.

Wow you have been through the ringer! Keep feeling stronger and stonger. It's awful what these meds can do to a person.

Razzleberry
05-11-2008, 11:49 AM
Thank goodness for your husband and the ER. Hang in there. I wish I had more helpful advise but just know that we're all thinking of you and wish you well. Those dang meds!

mnjodette
05-11-2008, 02:28 PM
Oh, onpointe, I'm so sorry you had that experience. What medication did they say caused that extreme reaction? And what are your medication options now?

I'm soooo glad your faith gave you the strength to stop, and so glad your husband and your friend could be with you. What a nightmare for you.

I hope you are really doing better now, and that some of the stress in your life is resolving itself. Keep going to your therapist! Sounds like it's going to make a real difference for you.

Jody

onpointe
05-11-2008, 02:36 PM
Hi Jody,

The meds are called Methotrexate, it's a type of chemo. My doctor said it was my last hope. Not to speak poorly of my doctor but he's only been in practice for two years and is in a fairly small town. He shares a practice with my GP, I asked my GP six months ago to send me to OHSU in Portland, OR because I have seven doctors due to my many medical issues, I thought it best to see a team of specialist which OHSU can provide. At that time he refused to give me the referral and to keep seeing my new rheumy. I have been bugging him ever since and now that this has happened, honestly, I don't trust my rheumy anymore. I am finally getting that referral, it might take a few months to get in, until then all they can do is treat my pain so this Lupus is just going to take over my body untl then which sucks but maybe the wait will be worth it, I can't imagine in this day and age that methotrexate is my last option for treatment?

thanks for your support! :)

Hugs,

onpointe

mnjodette
05-11-2008, 02:47 PM
Methotrexate is a common lupus drug, and it's used a lot in chemotherapy for treating kinds of lymphoma. I was on it for quite a while, but it didn't help my symptoms, so my rheumy switched me to Imuran; then Cellcept (which I'm still on.) Everyone reacts differently to medications, of course, and I did read that suicidal thoughts are possible when first taking Methotrexate. Of course, most of the side effects they list don't happen to most people, but obviously they happen to SOME people or they wouldn't have them in the informational material, right?

I'd really press for that referral to a clinic that is going to have a team work together on all of your health issues. Who knows? Maybe the extreme reaction to the methrotrexate was because of some of the other health issues, or another medication.

It's soooo tricky to be seeing multiple doctors. I'm lucky to have most everything managed by my rheumatologist. But, not always, and when I have to go to someone else, I feel like I have to give them the nickle-tour of lupus so they understand what's happened to me.

Onpointe, my prayers are with you - hope you find GOOD doctors, with SOUND advice for you.

Jody

NoodleMom
05-11-2008, 07:35 PM
Wow! How scary for you. And your HubbyMan.

I am so sorry that you had that experience. Praying for you now.

K

Faith
05-11-2008, 10:33 PM
That is very heartbreaking. I am sorry you had to go through that. This disease effects not only us but everyone around us.

I hope you are feeling better.

God Bless,

Faith 8)

Pretti in Pink
05-13-2008, 04:40 PM
onpointe,

Hugs and hugs and more hugs- I'm glad the "Holy" spirit intervened and made you reach out for help. I am more grateful that you received it and you are doing better. I could not imagine being in the position you were in.

Keep reaching out and checking in with us, you're not alone, we're in this together.

Rastagirl
05-14-2008, 01:39 PM
Hi Onpoint,

I haven't 'heard' from you in a few days and wanted to check in.

What a terrifying ordeal you had to go through. How frightening. I'm glad you're husband (and friend) were there for you and acted quickly. Thank goodness you have strong people to love and care for you. One thing my husband has learned along the way with my Lupus, is to be an advocate for me when I'm unable to look out for my own health interests. I've learned that it's always a good thing to have him with me in the E.R., just in case I'm unable to speak for myself, or just to have someone else that can communicate with the docs, nurses, paramedics, etc. about my Lupus and what's 'normal' for me.

One very frustrating thing I've gone through with my Lupus is the many ways that different meds can affect you. The side effects, the bad reactions. And it's such a challenge sometimes trying to figure out what's caused by what. Especially if you're on more than one medication at a time (which most of us are).

Along the way, I discovered that I am extremely sensitive to Valium. Had a horrible reaction that scared my husband. It changed my personality, made me very angry and paranoid. Over the course of just a few days, my husband knew something wasn't right. He tried to hide the pills from me (while he was waiting for a call back from my Doctor) and I went balistic on him. I screamed and threw things at him. I couldn't "see" the changes in me (even though they were obvious), but thank goodness he did. After that, my husband and I asked my Doc to please note in my chart (for other medical professionals to see) that I should NOT take Valium for any reason.

You learn along the way to pay attention to any changes (or feelings, for that matter) that may come when you are taking a new medication. Unfortunately, much of our education with this disease comes from the experiences that we have along the way. Good or bad.

I hope you are feeling better now. Although, I'm sure it's gonna take awhile for your body, especially your feet, and your mind, to heal. I hope the emotional toll of the whole thing doesn't catch up with you and add to your stress.

One recommendation: I think you should give your husband a BIG HUG for being there for you when you needed him the most. Tell him you're thankful he listened to you and came to your side (or made sure your friend did so) when you needed him. That's just my humble opinion. :D

I always made sure to let my husband know that I depended on his "strength" to help me get thru my ordeals. I wasn't trying to put a burden on him, just let him know that when things were out of control, I needed him to be my rock. Even if that meant just a huge HUG when I needed one most. And boy have I needed them!! :lol:

Along the way, my husband and I have learned a great deal about communication and how to express to the other how we're feeling or what we need, without any accusing or anger or guilt. It's taken some time and patience (especially for me) to learn how to do that, but it has made a huge difference with the course of my illness, not to mention our relationship.

Onpoint, I hope things are going better for you. And I'll pray for a good outcome, soon, with your custody battle.

Take care, :D

Lori