Occipital Nerve Block

Today I had an occipital nerve block done, to try and dull the pain of a migraine that has been going on for over a week. It is still helping. More tomorrow

I know I just posted but....

I know I just posted but after I posted I realized that there has been no mention as to why I am on steroids. I have panhypopituitarism, specific reason for the steroids is the adrenal insufficency part of the pan diagnosis.

In October of last year I went through a period of time where my body was not absorbing the steroids, which resulted in me feeling like crap, low blood sugars and no energy to put it simply. We switched from hydrocortisone to prednisone. And with me having another bout of not having the right blood levels we had to double the dose on my replacements.

I have been realitively stable so we decided that we would work on getting down to the appopriate physiological dose, which is 5mg and 2.5mg over a period of several months. Right now I am taking between 10-15mg twice a day so it is going to be at least several more months. Especially since the step down to 15 and 10 this week has not gone well

I will see pain managment tomorrow and hopefully have more than a couple of minutes with my doc, he is a very busy man but since there are a lot of openings tomorrow I am hopeful. I will be having an occipital nerve block. Which is a little bit freaky to be honest. And talking about a concern I have with the up coming procedure on 2/5 the sedation needs to be tweaked because I felt way to much in my opinion. And didnt have the nice out of my head experience where although you are aware that you hurt and are having something done to you you really dont care that much.

I will also see about getting the Prior Authorization done on the imitrex which I have been trying to get done for over a month.

There is a chance that he will also write for some more oral pain medication the fall on monday, the procedure last week, and the weather changes have all sent my pain into overdrive. I have kept a record of when I took the stronger pain meds that I recieved and will bring that with me because I did go through it faster than they really wanted me too.

Mindy

Too much too soon and migraines still here

I tried again to go down on my steroid dose again, and it is too much too soon. I just had to give a bolus dose of steroids in my arm. That does not feel the greatest still, since it still stings like the dickens.

I tried again to get into see my PCP today to see about getting an injection of something to help with this migraine, however they are still closed due to the weather. So I made an appointment tomorrow with my pain management doctor. I am not looking forward to the drive since it is over 15 miles away from my house.

I also work tomorrow and am praying that the boys will have school tomorrow. I don't think that I can deal with them for the whole day. Especially when they do not have cable or a house that has power in every room. Something went freaky when we lost power there for about an hour on monday.

Mindy

Migraine Migraine Go Away...

and dont come back another day. Ever!

Ice can go away for ever and ever too. We have had our first ice storm of the year, the second one of the season. I dont like ice, dont like to drive in it, fall on it, just dont like it period.

The story of the day is migraines. I woke up with one, went to the dentist with one, drove home on the ice with one while making two stops in the middle of the road to open the door put the car in park and puke my toenails up. I got home just in time to run to the bathroom again.

Tomorrow if I feel this bad I will see if the PCP's office can fit me in for a shot of some demerol and phenegran. I dont want to have to drive on the ice to the other side of town to go and see my pain management doctor and get an occipital nerve block. If the doctor's offices are even open tomorrow.

Mindy

Just tired

Overall today wasnt a horrible day but really wasnt that good of a day either. Mom hasn't felt good since she started the metformin, a little bit of comic irony, she didnt understand that it could make me so sick when I was on it, and know she is getting the lovely side effects that I had when I had to take it.

I have been in a bunch of pain today, and am running a bit low on my pain meds. Thats what will happen when you have to take an opiod pain med which is not nearly as effective as a triptan for a migraine. Or for severe back pain that doesnt respond well to your other meds.

I will just be trying to make what I have last as long as I can, and I have got to make sure that I have the right amount of stuff when I go back into the doctor's office just in case they check me out since we changed a bunch of stuff at my last appointment

I have got to make a change to the follow up appointment because it is scheduled for the same day that I have the next nerve ablation procedure and the meds that are given for the sedation make it where I would be absolutely useless at the appointment.

Mindy

Oh what to do what to do

I am not sure what to do any more. If I dont take one medication my blood levels drop lower than what the nephrologist wants me to be at. But the levels are still above the low limit of normal.

The medication is hard enough as it is, Polycitra. It is brutal on the stomach and gut. Reflux, GI difficulties, and retaining fluids.

I am not sure what to do or what decision to make with regards to taking the medication. There are risks if I take it and risks if I dont take it. Ultimately the decision is mine and mine alone to make. I mean if I take it I have got to send the rx to the mail order pharmacy because it is so dang expensive. But I dont have any room much less to store 16 bottles which is a months supply 48 bottles is a bit too much even for my historically large home pharmacy.

Mindy

Hi/Low Thursday

My high for the week is the fact that there was so many people who prayed for me yesterday as I had yet another procedure done to try and manage my medical issues.

Low is the fact that 1 of the kids I took care of threw 2 different temper tantrums that involved hitting and kicking me. The temper tantrums were both over 30 minutes in length which it has been a while since he has been that violent

What to do now?

I am trying to make the decision as to whether to sign up as one of the families for C.O.L.E.'s foundation.

It is originally started to support families with cancer diagnoses, but there are families with other diagnoses who are part of the adopted families group.

Getting their support was of great encouragement to me yesterday. When the sedation did not quite work as well as planned holding on to the fact that there were people all across the nation who were praying for me. Helped me to get through the procedure.

I will be praying for peace with regards to the decision and all that good stuff. I covet the prayers when I am going through a difficult period of time and that is something that no one can get enough of, prayers I mean

1 down 1 to go

One procedure down and one more to go in 2 weeks. that one should be interesting since I am scheduled for my 1 month follow up with pain management that day also. I am going to have to reschedule the appointment because I am useless for about 12 hours after I get the consious sedation drugs.

Today the procedure went well. My only complaint was they did not give me enough versed to be out of it enough. I only got 2 this time and got all of the fentanyl that was available.

It was so refreshing and encouraging to pull up COLE's Foundation and be able to know that there were people all around the world who are praying for me, the doctors, and the procedure that we had today.

I am getting ready to go and lay down again and get some sleep.

This is just a few thoughhts on the adventure of today, will write more later

ARGH!!!!

How many phone calls does it take to get 2 prior authorizations done on medication.... right now I am sitting at 2 this week, at least 3 last week, and 3 more the week before. One phone call I actually spoke with a person who said that she would take care of it that day, that was a week ago tomorrow. I have left a message on the supervisor's voice mail and have yet to hear anything from her.

Surprisingly the only person at that office who has done their job in a timely manner is the surgery scheduler.

I have lost all faith in them doing their job and have made an appointment for tomorrow to get this taken care of and see about getting injections done in the side of my head.

Thankfully I recieved a prescription for a stronger pain medication at my last appointment that has been my saving grace when dealing with migraines without an abortive for the problem.

Melinda

The new news

Attention Attention!!

Hell has officially frozen over. The scheduler for my pain management doctor, actually did her job without me having to bug her to do it. I called her yesterday to try and get information and I almost died of shock when she said first that she had been working on my problem, and second that she had both scheduled.

Now the lovely procedure is called a radiofrequency nerve ablation. There is a funky name rhizotomy, I think is how it is spelled.

I have to show up on thursday at 6am at the hospital, do the normal weight, height, and pre op questions.

They will then start an IV, thankyou God for the EMLA cream. One of the set of nurses is insistent that the line be started up in the wrist/hand area the other set does not care if it is started in the forearm area.

I will then be wheeled back into the pain room. move over to the table, the doctor will then come in say hi love ask which side for a quick reminder and then push the happy medicine. The happy medicine is most commonly fentynal and versed. The doctor will use the fluroscopy x-rays that we generated in the previous 2 procedures to verify where he needs to go. After he is done I will wake up enough in back in my day surgery room where I started the day out. The goal for me being able to leave is drinking something without getting sick.

Tomorrow and Sunday I work. and on thursday the lady I work for is going to have to switch her schedule at work because I have got to have this procedure done.

Mindy

No not me

I got up this morning with great plans. Only to be soured by 2 bratty kids. I made them a nice little fruit plate, expected them to eat it, no not me would be surprised that one ate like he was supposed to and one didnt.

Got them to school, came home to get my breath, then went to the eye doctor. I didnt play any games on the new resident that I had today, no not me. Had to make him laugh sometime somehow just for the sake of doing so.

I picked up one boy, learned from trial and error to always check his bag to make sure he has his conduct folder. No not me I wouldnt make him go back and get it, no not me.

I wouldnt sit and watch the same funny moment over and over on the dvr just to have the fun of laughing, no not me.

I wouldnt go up to the hospital to get my mom without a bra on, no no way not me.

I wouldnt tell a customer service representative that she is an abosolute idiot, and yes last time I checked I do know how to do simple subtraction since I graduated highschool. No I am way too nice to be caught doing that.

I wouldnt know from experience that the only way to get any decent help from said mail order pharmacy company is to call at 2 or 3 am.

I wouldnt be typing at almost 1 am when I have to be up at 5 for the second day in a row, no I am way to smart to do something that stupid.

No not me monday version 1.2

Not Me Monday

I did not not fall asleep until 6:00am because I was hurting no not me

I did ignore the call on my cell phone from my friend because I knew there was no way I could listen to her loud voice, no not me.

I am just plain tired...

And fed up. I am highly suspicious that I have been leaking spinal fluid out of my ears and nose, it is a clear watery fluid that is known to taste sweet because of the glucose that is contained in the spinal fluid.

I have diagnoses and specialists form just about every dang body system. The only ologist that are not included are cardiologists and immunologists. Included is GI, ENDO, HEM/ONC, OB/GYN, REPRODUCTIVE ENDO, NEURO, NEURO SURG, NERO OPTHO, DENTIST x2, PULMO, PSYCH, NEPHRO, ENT x3, ANSTESI.

I am fed up. Nothing seems to be working. My migraines are out of control, GI is screwed up and miserable, ENT is extremely painful, ENDO is just generally crappy, and my back pain is breaking through all my meds.

What I need is as follows:

1. Food allergy testing
2. Increase and/or change of nausea med protocol
3. Change in muscle relaxer
4. TENS unit
5. Addition of stronger med for migraines when they dont respond to the Treximet the have driven me to want to go to ER to get some relief havent because the wait, the lights, and the noise make it worse
6. Something to help me relax so I can rest decently, thats hard when you hurt
7. The Prior Auth done on my Imitrex, its been almost a month
8. A fix now for the ear pain, or at least a plan to fix it with a specific timeline...the ear infections are getting real old
9. Testing and a fix for the fluid leaking
10. a blood sugar meter that has a light, make it easier to do the 2am checks while weaning the steroid to the apppropriate physiological dose.
11. Something to slow down my gut, thats a weird request with gastroparesis
12. A fix to the ear problems so I can tolerate the CPAP that I need for my sleep apnea
13. Reduction in my pressure headaches that have increase due to the increase in GHT

This list of 13 things are what I desprately need to improve the quality of my life. It is now 6:15am and I still havent been able to get comfortable enough to sleep.

I have been fighting chronic illness since I was born and I need some relief quickly because I am getting tired and sick of fighting to have some level of functioning.