Just simply tired. I am tired of dealing with the pain, doctors, stress, symptoms of my medical conditions, and the normal stuff that people deal with....money and all that fun stuff (NOT)

I only had 3 doctors appointments this week. I use the word only because some weeks I have more than 5 and sometimes multiple ones on single days. 2 went well and 1 was not so much.

The not so much was the ENT appointment that was to check out whether or not I would be a good canadite for tubes since my frequency of ear infections is up to every 5 weeks with a 10 day cycle of antibiotics. The scheduler would not schedule me for any where near when I needed to be seen for having an active ear infection, I needed to be seen at day 4-6 post diagnosis but they wouldnt schedule me for any sooner than 10 days post diagnosis. They also wanted to do a test on my ear drums I gave them 10 minutes, 2 people to try, and was as patient as I could get. After 10 minutes I was crying and told the person multiple times to stop before the tech did.

The stuff that pain management did in clinic only helped for about a day and my scalp is still sensitive from where the needle was used. It doesnt hurt as bad as it did the first time that I had an occipital block done, so there is more hope in me trying that procedure again. It is a little hard to actually guage how productive and helpful it is since they cant do both occipital nerves because he wants to be really careful with the side that has my VP shunt on it because that is by far my lifeline and is my saving grace the majority of time if you just consider what modern medicine has done for me.

I will ask about the lidocaine/ketamine infusion that I have learned about from another IH family. I forgot to ask about it at my clinic visit, if it can help break the cycle of the pain from the migraine/cluster type headache I am game. I officially dont have the diagnosis of cluster headaches but from how they have presented over the past couple of months I am fairly sure that that is soon to be added to my many diagnoses.

I am still waiting on getting the letter that I need for my application for social security disability from my endocrinologist to go with binder and binder. Or I might just start the process myself by requesting the paperwork that I need to fill out and get the process to my first decision done quicker. I am just tired of waiting and it is getting frustrating knowing that I am such a burden for my mom with my medical expenses. She says I am not a burden but I can't help but feel that way when my medical expenses are easily 1 grand a month with cobra and medications.

The only really good thing that has happened this week is that I first got a phone call from Dr. A my pain management doctor to check on me and he wanted me to drop off a copy of my resume because he is hiring and because he is actively treating me he is more aware and understnading of my physical limitations. I made sure to ask him before I dropped off my resume the first time that he was completely aware that I do have some physical limitations but am one of the more dedicated and determined potential employees that he could ever get.

I am going to take the advice of one of my internet friends and take some time for myself today and relax and enjoy just laying in bed and watching Monk on my computer since Hulu.com is under maintaince still and cant set up an automatic queue like I can with my iTunes set up.

Mindy

Greatful and other details

I can only sum up what my feelings are for my pain management doctor with that word, greatful.

Dr. A and his physician assistant Julye are not ok with me being in significant pain. They said that at my first appointment that they thought that chronic pain was a major issue which was different from the thoughts of all of my other physicians, which I do have a bunch of them. I saw them yesterday as an urgent patient appointment, my next scheduled appointment to get refills on my medications was next week but I had a few issues that I needed to take care of with their staff, and was in so much pain from a migraine and neck pain...could barely move my head from side to side had to actually move my whole upper body to have as much visual range that I needed to see my blind spots when I was driving.

He did another occipital nerve block and a set of 2 cervical trigger point injections. The occipital nerve block and the left cervical trigger point hurt so bad my body tensed up and I started to have tears form in my eyes. He was very gentle and asked me multiple times "You okay Love?" I kept saying yes I will tell you if I need you to stop, right now I just really need to focus on my breathing, if you can help me with that I will be doing a bit better. So he started saying deep breath in and out and helped me to focus on my breathing.

Tomorrow I will go and see my ENT tomorrow to figure out if I am a good canadate for ear tubes to try and reduce the frequency of my ear infections and the resulting 10 days on antibiotics. It is rather ironic because this is the doctor that wouldn't place tubes when I was a young child, and he is the one who put tubes in my dad when he was in his 30s. But he is atleast willing to think about doing them now. I want to have them placed under general or atleast concious sedation even though I know that it can be done with just a local. I am just not that big on being in pain when there are less painful options available. This will make it the 3rd major procedure that I have done within the current calander year.

The Day After

Today is the day after the procedure, rhizotomy, that was done yesterday. And right now as can be expected my pain is worse. The muscle pain can be worse for up to 2 weeks thanks to the trauma of the procedure.

Bending, moving, lifting are all problematic. I have slept the majority of the day and am planning on resting/sleeping the majority of the day tomorrow. I am just trying to stay with my pain so it does not get out of control.

I got the bill for the right side today and it was just over 11k. with my estimated portion being 0 since it was done at an in network preffered provider. Got to love insurance even with the hoops that you have to jump through to make the insurance company happy.

I am currently in limbo with regards to my ears, have to wait until I have another raging ear infection so the ENT can see it for his own eyes and make the decision as to if I would benefit from tubes. He doesnt want to treat me like a guinea pig but I am not so thrilled about having to wait for yet another ear infection.

Mindy

Tomorrow is the Day

Tomorrow is the day that the next procedure will happen to get me closer to pain free, or at least tolerable pain so I am not so dependent on medications to lessen the pain enough for me to be able to function.

I am looking forward to the procedure with baited breath because the conscious sedation did not go very well last time. I in my opinion was far too aware of what the good doctor was doing. Not the most pleasent sensation poking a nerve intentionally.

Tomorrow's schedule will go something like this. Wake up with my alarm at 4:30am so I can take a nice long hot shower. Get dressed pull meds and hook my tens unit up since I will not be able to take my pain meds due to the medications that they will be using for the procedure. And the tens unit will help keep the muscles relaxed, it truely has been a god-send for the past couple of weeks. I will be able to take my steroids, and my thyroid medication and my acid reflux meds but that is it until after the procedure, and I am going to be pushing my luck taking prednisone without any food on my stomach but that is one of the medications that I can not miss, especially with the stress of a procedure on my adrenal glands that don't function due to my adrenal insufficency. And put on EMLA numbing cream as soon as I get out of the shower on 2 sites so whichever nurse I end up with has some choice and it wont hurt when they go fishing for IV access.

I will wake up mom about 5:15am or so so she has time to take her meds, get something to drink if she so chooses and get dressed.

We are supposed to check in at day surgery at 6:00 and my procedure is supposed to start at 7:30am. I will have the same team that I have had for the previous 3 procedures that this doctor has done. It shouldn't take more than an hour in the procedure room, closer to 30-45minutes but it is scheduled for an hour just in case. I should be in holding after the procedure for about 30 minutes that is about how long it takes me to wake up good enough to have something to drink and keep it down, although it is hard to puke anything up with my fundoplication.

Then I will go home take some pain meds and a muscle relaxer, put on my CPAP and go off into la la land again. It takes me about 24 hours to be back to totally normal and not have a drugged up outlook.

Thank you for your prayers, I am more nervous about this because of the not so hot experience with the sedation the last time.

Melinda