Advice

General
1

I work as a RN educator as I had to leave my job in an ICU due to psoriatic arthritis, trigeminal neuralgia and fibro. What I would like to know is how the heck do I manage that and my two kids and life??? My son has a hockey tournament this weekend and of course my hubby is working. (not his fault). And I am feeling like crap. Pain is crazy. I am taking morphine to cope and the thought of the upcoming week makes me cry. I literally want to cry. People do not understand why I can not ‘volunteer’ or help out. Friends do not understand why I can not come out and do this or that. I literally have locked my office door at times and laid down on my coat etc to try to nap to be able to cope.

I am on a biologic and ad mars for my arthritis, tegretol for my trigeminal and the dr has me on elavil and cymbalta for the fibro. We tried gabapentin and I could not function at all. We tried a pregabapentin drug with no help at all. I take long acting morphine every night and short acting prn.

I also take synthroid as my thyroid was removed due to a massive tumour.

I need to work financially but I need some advice or tips from you guys on how to make my life livable and work for my family.

Thanks

2

Kirsten,
I’m so sorry to hear the pain you’re going through.
Have you tried lyrica? I know it’s nothing as strong as morphine. But It may help to be able to get you to go do what you need to do throughout the day.
I know just with fibro I feel like crying and I curl up in bed a lot. So I can’t imagine with everything else you’re going through.
I’m sorry they don’t understand. Thing is they never will. That is because the education is just now out there and it was ruined when it was first interpreted as “a all in our head problem” years ago. So why would anybody listen now. First impressions stick. Right!?
Anyways please hang in there, if anything I’m here to listen and help in anyway I can. I think you can do this, fight hard and strong and don’t give up!
Joy

3

Hello Kirsten

The answer to your question is that nobody else can tell you how to take all your elements of people and health concerns and make them work. Each of us is created uniquely so what works for one will not necessary work for another.

It's going to come down to what you can manage with your combination of chronic illnesses.

I can tell you what I did. I have fibro, myofascial pain, under-active thyroid, IBS. I taught school full time. I was a single mother raising my children alone who were 3 years and 8 years at the time of my divorce. My daughter was involved in music and my son in hockey. I was taking one university course at a time. Yet I took my son to every hockey game and tournament and I drove my daughter to the city for flute lessons and piano lessons and I attended every music event she was in. I read stories to both my son and my daughter(not the same stories. I also played the organ regularly for Church Services. If that conflicted with his hockey schedule he would go with one of the other parents and then after Church I would drive to the hockey game. Yes, it's hectic, but you manage to get it all done. The one thing that was missing was time for me.

4

I am a nurse also i have been off work since july and just got approved for my long term disability thru work Their are several companies that hire RN"s to work at home. I have a friend who is working 8-12 4days a week. Is there anyway to hire someone to maybe come in once a week and clean the house or carpool with another parent for the kids after school activities.

5

Kirsten,

I'm in the same boat, I have 3 kids (13,12, & 7) and I agree with Rachel there is no right answer. We want to do for our family but we also need to listen to our bodies if not WE WILL pay. Last week I had a crazy week where I was leaving the house at 6:30 in the morning and not returning until after 8:30. There were a couple of days where I had to go out to my car during lunch and take a nap. I just needed to rest. This past week I've had plenty of times where I just wanted to sit and cry but realized that wouldn't help. Wednesday night I took my daughter for frozen yogurt with some friends after her musical and I thought I was going to have to call my husband to come get us because I was just to exhausted to drive. I didn't but I sure wanted to.

Can you take your son to the tournament and sit in your car and rest while he isn't playing? I find that if I even just sit in the area where things are going on, even though I'm not doing anything I'm still not resting. And don't let yourself feel guilty for not volunteering there are other parents who aren't going through what your going through who can help. It is a hard balancing act, we want our children to do what other children get to do but we also need to make time for ourselves.

Gentle Hugs,

Stacey

6

Dear Kristen,

My heart goes out to you, I just don't know how you are even making an attempt to keep up! I too have PsA, and have seen my sister in law suffer beyond words with TN, and the medical community clearly lists it as the worst pain known to mankind.

NO, people don't understand, and unfortunately make little effort to change that. People disappear when you can no longer be the one who is perpetually giving.

My first med for nerve pain (Sciatica) was Gaba, and it was like I was in a spinning top, it was changed to Prega, and I have been taking that for years, 225 mg 3x daily, my GP wanted to get me up to 300 mg, but the Rheum said "NO", because of the swelling. I do have to 'go off it' for days sometimes to alleviate the swelling, fortunately my body proccesses it naturally.

It is so incredibly painful for me to ride in the car that my Rhuem started spraying my SI joints and central canal Spinal Stenosis with Ethyl Chloride, and then gave me a prescription, but as you know, getting that near the the mouth and nose will literally 'knock you out', but it gives hours of relief, and it does help me to ride in the car short distances, so it may help other areas as far as the PsA, it is much better than Lydocaine patches. I have literally had to ask strangers in bathrooms to spray me, but if they are willing, so am I!

I was on Embrel for years, and at the end of Dec caught the worst flu/bronchitis of my life, my GP told me my immune system was shot, told me not to dare take it again until I was completely well. I feel like I have a bit more energy as I have NOT yet resumed that med. I see the Rheum on 3-3 to discuss this move. I know it slows the progression of the damage, BUT I even before the flu, I was going from the bed to the couch, just fatigued and exhausted beyond words. It's always a catch 22, you know.

I'm not sure if I've been any help, hope so. I give you so much credit for pushing yourself to work, and care for your family, but your body is trying to tell you something. I hope you can somehow find a way to take better care of yourself.

I take Opana, though I cannot tolerate the time release type, and have to take Phenergan and Benadryl to tolerate it on any level, it's is surely a necessary evil at times,, but I am not a fan! Daypro is my NSAID, and nothing helps the bone pain more! I take the max, it is more helpful than any other pill I take.

I am hoping that you have a parent, sister, brother, aunt, best friend or SOMEONE who you can call or go to and ask for help, who can take your son to his hockey game and root for him!

Sending you lots of love and understanding,

SK

7

Bfore i quit my surgical tech career i worked 12 hrs a day drove an hr to work n an hour back in severe winter weather the only thing that kept me in control was a routine. Up at 5 am and in shower and a scheduled routine. None of those fibro meds u r taking never worked for me. What dkes work perfectly is a tramadol w a flexeril in morning...then again at night also high amou ts vit d3,vit b complex. Now that i no longer work i am a medical marijuana pt becuase i am allergic to everything and let me tell u...it controls my pain better than any kf the pills.