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tgal
04-20-2011, 05:56 PM
Update Everyone. I am so sorry that I haven't been around much but I have been in the worst flare that I have had since I became ill. As many of you know I have refused pain meds and every day it became and worse. Every symptom and pain that became unbearable. Today the chest pain I could get under control with the nitro and I became so sick to my stomach I couldn't put it off anymore. I made my daughter come early and take me to the doctor. I was going to go in the morning but I couldn't live like this any longer.

We made it to the doctor for his last work in of the day. We were sitting there (me leaning my head against the wall) when all of a sudden they started calling people in one behind the other and each one left after about 2 min. They called me in to say that the doc had to leave on a family emergency but those of us sitting here could be worked in tomorrow without having to go on the "walk in" list. My heart broke. I finally got bad enough to come in and no help was available! Before I knew what I said my mouth opened and spewed "I may have to go to the ER then". I thought my daughter was going to fall out! LOL

They went ahead and made my 10am appointment and we walked out. If I turned right I was going to my car and if I turned left to the ER. Ashleigh looked at me and said "Mom, we are already here. You don't have to go through this anymore". So I went to the ER (She said she was so proud of me LOL). They didn't do all the tests that they wanted because I asked them not to because of my lack of insurance but they did an EKG and my heart is OK (most likely inflammation of the arteries leading to the heart). I don't have the bladder infection that I thought I had ( so I have to talk to the doc about the extreme lower back pain) so I was getting ready to go and just go to the doctor tomorrow since I knew I wasn't going to croak overnight due to my heart failing. The doctor stopped at my bed and said "Mari, are you sure you don't want me to give you a couple shots at least? We have a couple of options. We can do high dose steroids, Pain and nausea meds or both. I agreed to the steroids but not the pain meds. He came over by my bed and said "I understand you don't do pain meds but let me give some to you so you can get some relief until the steroids kick in. Then the steroids can get you through until your appointment tomorrow." I agreed.

So I am feeling SO much better than I have in almost 2 months! I knew I felt bad but hadn't been sure exactly how bad until today. Hopefully I will be able to catch up on all of the posts that I missed and become more supportive again.

Will let you know what the doc says tomorrow!!!

Nonna
04-20-2011, 06:17 PM
Hugs to my sweet thing!
Hugs to Ashley, I'm also so proud of you both.

Mari, you make me feel better, like what I'm going through is nothing compared to your misery.

Hugs, Good Thoughts and lots &lots of love headed your way
Toni

tgal
04-20-2011, 06:24 PM
Oh Honey mine is nothing worse than anyone here! We all have things to deal with and we do the best we can. I just felt bad that I wasn't keep up here like I should have! I miss all of you

mdawncooper
04-20-2011, 07:03 PM
Praying for a good doctor's appointment tomorrow.

Melanie

Colleenc
04-20-2011, 07:36 PM
Thinking of you!!!

Colleen

tgal
04-20-2011, 07:40 PM
Much better no ladies. Thanks so much! Meds make all the difference!

Linda From Australia
04-20-2011, 08:02 PM
I wish my shoulder was closer to you

rob
04-20-2011, 08:06 PM
This physical and emotional rollercoaster we're on is one tough ride. Sometimes I don't know what to say. I just hope you are OK.

magistramarla
04-20-2011, 08:41 PM
Hey Mari,
I hope that the meds help you to get a good night's rest and that the appointment goes well tomorrow.
Sometimes, we all have to give in and accept some help.
Hugs,
Marla

steve.b
04-21-2011, 01:21 AM
some times you support us............
for now let us support you.

debbie-b
04-21-2011, 03:47 AM
Feel better soon, let us know what the doc had to say.
Thinking of you.

Debbie

tgal
04-21-2011, 12:03 PM
Just got in from the doctor and I promised an update.

The doc was not very happy that the last large shot of steroids only lasted 4 days instead of 4 weeks. He said "oh, this is not good. Not good at all". LOL How is that for starting out a conversation! Anyway. Due to the fact that I already have CNS involvement and am having issues with the arteries leading to my heart he believes that we have to be more aggressive in our treatment of this flare. Therefore he is raising my steroids to 60mg a day and he is giving me a single dose of methotrexate to see how my body reacts to it and I will come back in just over 2 weeks.

The plan is for us to fight heard for a little while and then we can start working our way down on both the steroids and the metho. I am also going back on the ammitripyline since I am still having spasms in my bladder (we now know that it is not a reaction to the meds) and I am going on another medicine to try and help the IBS get under control.

So there you have it. My medical plan for the next few weeks. I am still feeling good from the steroid shot last night so at least I will have a pretty good weekend.

Hope everyone is doing well and if any of you have any cool, wet weather please send it my way!

Linda From Australia
04-21-2011, 03:09 PM
Let's hope you will continue to improve so you can enjoy your holiday in July

bunny28
04-21-2011, 03:23 PM
I am proud of you for seeing the doctor, going to ER. I hope things start to improve.

I am wondering if your doctor gave you any explanation for the chest pain. I hope so. I am not trying to tell you what it is but wanted to mention that I have been reading lately (Dr. Wallace) and remember that costochondral pain (synovial joint where ribs meet chest plate) can mimic heart attach symptoms. If you are still looking for a reason, maybe you could ask about that next time you see him. Of course the explanation may be the CNS involvement you mentioned. Anyway, I had chest pain a few weeks ago and was terrified so I can only imagine how you must feel dealing with that and so much else in this flare. Perhaps the reason for the pain is irrelevant at this point and just making it get better is all that is important. I hope that happens quickly for you...You deserve relief as soon as it can happen.

Take care.

tgal
04-21-2011, 04:29 PM
I am proud of you for seeing the doctor, going to ER. I hope things start to improve.

I am wondering if your doctor gave you any explanation for the chest pain. I hope so. I am not trying to tell you what it is but wanted to mention that I have been reading lately (Dr. Wallace) and remember that costochondral pain (synovial joint where ribs meet chest plate) can mimic heart attach symptoms. If you are still looking for a reason, maybe you could ask about that next time you see him. Of course the explanation may be the CNS involvement you mentioned. Anyway, I had chest pain a few weeks ago and was terrified so I can only imagine how you must feel dealing with that and so much else in this flare. Perhaps the reason for the pain is irrelevant at this point and just making it get better is all that is important. I hope that happens quickly for you...You deserve relief as soon as it can happen.

Take care.

Hi Bunny,

Actually both my doctor and the ER doctor believes that it has to do with the flare that I am in. With all the inflamation they believe that the arteries that lead to my heart are inflamed which means they are basically spasming or getting smaller due to what my body is going through. Although it is not my heart it feels like my heart because it is reducing the blood flow from my body into my heart. One of the reasons they seem to be leaning toward this is that less than a year ago I went to a cardiologist due to heart pain and an ultrasound of my heart, EKG, stress test and several other tests were run to make sure that there was no actual damage happening in the heart itself. They believe that if we can stop the inflamation then we can get most of what is going on with me under control.

I do feel better about the methotrexate after talking to the pharmacist today. I guess we will see what happens!

magistramarla
04-21-2011, 08:41 PM
Hi Mari,
I am so very happy for you that you now have a doc who understands you and tries so hard to help you.
I'm sure that you've read a lot of our conversations about MTX. I'm guessing that they are giving you the pill form. Be prepared - you might feel quite nauseous.
Take it in the evening if you can, so that you can sleep through most of the nausea. A warm cup of tea and a chocolate right after my injection are helpful to me.
The MTX gives me a metallic taste in my mouth, and the chocolate helps with that. It also makes Jeff feel better about giving me the shot - he makes my tea and brings
it to me with my chocolate treat.
Good luck, and feel better soon.
Hugs,
Marla

steve.b
04-21-2011, 10:08 PM
good to see progress.
often, we do not know what is happenning untill after the event.

listenning to your story, over the last few months, i am glad to see direction for you.

i may be 1/2 a world away, but i think of you often.

enjoy your holiday!!!!!!!!!!!

bunny28
04-22-2011, 05:36 AM
Thanks for sharing the doc's explanation. I just want you to get better and to have answers to your questions. I hope today is a better day. Take care and try to let yourself get some rest.

tgal
04-22-2011, 05:54 AM
Thanks to all of you! Bunny, I did write down what you said in case this doesn't work I will know which direction to send them! Marla, that is great information. I was going to take it tomorrow morning but I guess I will do it before bed tonight. Steve, you are always so kind. It is appreciated!

BonusMom
04-22-2011, 06:20 AM
I've had a lot going on, Mari, and am just now getting updated. So sorry to read about your flare. It sounds absolutely miserable! I do hope the steroids and MTX combo will provide you some much needed relief.

Hang in there, tootsie, and don't be so afraid of pain meds if you're in such agony. Hope you start getting some relief (and cooler temps) soon.

Linda From Australia
04-22-2011, 03:39 PM
All the best for your MTX day. Rest up.

magistramarla
04-22-2011, 08:24 PM
Mari,
How do you feel today? I hope that you tolerated the MTX well.
Hey, it's good to see BonusMom here again!
Hugs,
Marla

tgal
04-22-2011, 10:40 PM
Had too much to do today so I will be taking it in the morning. I will let you know!

Nonna
04-25-2011, 04:39 AM
Mari, did you ever take it? How'd you do?

hugs

tgal
04-25-2011, 06:09 AM
Hi Nonna,

I took it on Saturday morning. I decided to take it in the morning since I was alone. I wanted to be awake if there were problems but everything went well. I was tired on Sunday and I found that foods didn't taste good but other than that I felt fine and I still feel OK. Thanks so much for checking on me

rob
04-25-2011, 09:28 AM
I'm glad you are tolerating the MTX well Mari.

magistramarla
04-25-2011, 03:53 PM
Hi Mari,
I'm glad that you did well with the MTX. I hope that it really helps you.
I've noticed that food doesn't taste very good to me the day after my injection. I stick with bland foods for a day, and after that my appetite is fine.
Hugs,
Marla

Nonna
04-25-2011, 04:37 PM
Good to hear, I take mine Saturday night to avoid the dizziness. by the afternoon of sunday and monday I'm tired. but by Tuesday I'm ready to rock and roll. Marla's idea about the chocolate helps to get rid of the metal taste.

hugs
toni

Linda From Australia
04-25-2011, 04:38 PM
I am so pleased you managed with the tablet. I was wondering how long it takes before you start to feel better