Friday, May 31, 2013
My tolerance level for the damn woodpecker is better. Still gives me a headache every single day. However, not as intense. Amount of tylonel being taken before is less and less. The MT was raised this week. Overall my tolerance level for being there is getting a little bit better.
The million dollar question I keep getting asked from those around me and those who know I'm doing this is "How do you feel? Can you tell a difference?" Not noticing much of a difference in the positive realm of life. I've had a few people tell me they can see a small difference. I have a hard time believing them.
Life has a way of getting in the way. Knocking you upside the head, screaming at you to wake up and pay attention. This week I got that wake up call. I had an appt scheduled with my hemotologist for Wednesday. Because my summer work schedule is on-call I never know from week to week what my days off will be and some weeks I don't know what I will be working the next day until that day. It is crap-tastic at best. However, it is the best I could do when it came to picking for summer work schedules. I cancelled my hemo appt so I didn't have to miss work. I'm trying hard to get to work and not miss. Tuesday was a rough day. It was one that just plain and simple was rough. I went to bed in hopes of sleeping. Instead, sleep was no where in sight. NOT.EVEN.CLOSE. Exchanging texts w/a friend turned to emails bc that sometimes is easier on our phones. One thing led to another and we ended up talking on the phone into the weee hours of the morning. When we hung up I had about 2 hours before my alarm would go off for work. I knew I wouldn't be able to work. Since my job is safety sensitive...sleep is a nessassary commodity.
After I called in sick to work I began thinking about the appt that I cancelled because I had to work. Hoping and praying that time slot would still be available...I called the clinic the moment they opened. I was fortuanate to get in to see the new hemotologist. So thankful I did. So thankful that I choose her. My last dr. is ill and had to leave her practice. And sometimes there are blessings among tragic circumstances. This would be one of them.
We discussed some pretty heavy things. Things that I know. Things that I don't like to hear. Things like "you will probably need IV/PICC infusions every 12-18 months for 6-9 week intervals for the rest of your life."
I am scheduled to have a PICC placed on June 14th. My last experience was rather negative. The thought of having to relive that horror again is enough to make me sick. Yet, I know it needs to be done. This morning , I got up and called the clinic and spoke to one of the treatment nurses. Letting her know that having it done sooner than later is probably for the best. Waiting 2 weeks will only increase my anxiety over the entire situation. I'm still waiting to hear if they can get me in today or next Tuesday. Given that it is late morning today, my guess is it will not be scheduled till next week.
The good news is the iron levels were not as low as they have been in the past. The TIBC direct panel is raised and shows that it is likely I've been deficiant for awhile. Which I've known. Hoping things will turn around quickly!
Monday, May 20, 2013
I'm not all that interested in adding more time sitting in the chair and adding treatment to the opposite side for anxiety.
Not sure when that will happen.
I wish it was easy as keeping calm and taking meds.
Tuesday, May 14, 2013
Monday, May 13, 2013
It was just myself and the technician. So much nicer not having an audiance glaring at every twitch and move I make.
So much nicer not having several people there. As I said previously, so far every single person has been nothing but awesome. My perception of the entire process isn't as awesome.
Which brings me to the next piece...
Over the last few days I've been incredible angry.
Angry that this is where I'm at.
Angry that this is the alternative.
Angry that damn it this is my fucking life.
And then the anger subsides for a short time.
And then a variety of other emotions come to the surface.
And then before I know it the barrage of emotions...come crashing down...and I find myself in a pile of tears sobbing.
Because damn it all...this is my life
Because damn it all...I hate this.
Because damn it all...I hate that THIS is basically the only option I have left.
Part 1 ~ Journey to Transcranial Magentic Stimulation
Part 2 ~ Jourey to TMS ~ An Answer to A Prayer
I can't promise I will blog/journal the entire process. However, in the first week or two I will try. With weekly updates as time goes on. There are not very many blogs that discuss TMS Treatment/Therapy.
The following was wrote the evening after my first appointment and the day or so after.
Week One....Day One....or so I thought.
Today was the beginning of treatment.
Or so I thought. It was my hope anyway. Instead, I sat for almost 2 hours in the TMS chair while the psychiatrist and assistant attempted to find the motor threshold.
They were unable to find the spot they needed.
I will return at the end of the week and see a different doctor from the sister-clinic.
My anxiety was high before the appt. today. It is much higher now. I came home and spent the next two hours puking. And the last 2 hours I've spent trying to stay present, not give in to the negative self talk and swirling associated with it.
TAKE 2....Week One...Day One...Retake.
Today was the beginning of treatment...repeat.
Dr. W came from another clinic about 1.5-2 hours away. The psychiatrist that will be overseeing my treatment is local and new(er) to TMS.
Dr. W set up some parameters at the beginning. Talked to me a little bit about a few options that he/we would have have if he was unable to locate the spot that was needed. It took a great deal of self talk to get me to this appointment. My toleraence level was markedly less today than when I was there on Monday. After what seemed like hours they found the particular spot they were looking for...or...so they thought and on my way to getting this crap done and over with for the day.
After finding the proper placement they needed to find the proper dose or whatever it is called.I believe it is called MT-Motor Threshold. I can't remember right off hand.
And then they started the first treatment. I had watched several different videos on what to expect, what it feels like, and all that other jazz. When Dr. W described what I may/may not feel he didn't give a very accurate description. He told me "depending on how well you tolerate it...we may need to tweek the angle a little bit...if it hurts in your eye, teeth, or left side of your face let me know..."
SOB....he was so incredible way off. I truly had no idea how horrific it would be. I don't blog this to scare anyone off. I'm brutally honest. I wish that I had somewhat of a clue what to expect. That first set took me off guard. To say it was awful would be an understatement.
Treatments are generally 37-40 minutes long or some damn thing like that. However, the target dose is higher and requires the system to take a longer break. Which means treatments will take about an hour and half.
There was much unraveling today. I received half of the treatment today because of the length of time it took to find the motor threshold. By the time I was done we were done today.... I was DONE....and I really was MORE than DONE!
It was comforting to have the technician be as understanding as she was. My gut tells me she will be good to work with on a daily basis. Trusting her will be another story. The Dr. and Technician from the sister clinic were super nice and sweet. However, my tolerance for men providers isn't always the best.
It took quite awhile for me to pull myself back together so I could go to work. I worked the rest of the day. Stuffed the emotions and feelings associated with this. The moment I am in my car and alone - the tears turn into sobs.
I'm angry. VERY angry.
I hate that I have to do this.
I hate that this is my life.
I hate everything about this.
Part 1: Journey to Transcranial Magnetic Therapy
It had been about 2 months since I heard from the TMS Clinic. As I wrote previously (and below), it came at a very low point.
In a nutshell, the clinic manager called and let me know that they were still working with my insurance company. And because of the complexity of the insurance issues, they were willing to take a risk and start treatment.
An answer to a prayer.
I wrote the following excerpts in a google document about a week ago the day before I went for the first appointment/treatment (that treatment didn't happen...more on that later)
*Initially when I got the call from the TMS Center...I was very hopeful. I immediately text/called two of my closest friends. Speaking with one of them on the phone while she was working. Fear, self sabotage, and all that other crap didn't have a chance to sink in at that point.
The call came on a day when I was unable to get out of bed. At a point where not much more fight was left.
That call was nearly a month ago. I've had plenty of time to back out. I've had plenty of time not to follow thru and just plain build my anxiety up so damn high I can't stand myself. Night terrors have filled nearly every single night of the last 3-4 weeks. Much in relationship to TMS therapy.
And my anxiety is extremely high. LOTS AND LOTS of anxiety!
There is no turning back. I can't keep going like this. I know something has to change.
So I will go.
And make the best of it.
And pray for the best.
In less than 24 hours, I will go for the initial treatment. I'm not sure that I can do this. I don't want to go alone. I will. I have to. My children deserve to have their mother back. If anything else. They deserve to have a mom. And I deserve to be their mom w/everything that I've got.
Sunday, May 12, 2013
I'm pretty certain it wasn't an hour after she gave it to me that I made the call to the clinic. They were doing consult/intakes at no charge. At this point in the game...I had NOTHING to loose. A day or two later I received a phone call from the intake coordinator (or whomever it was) and made an appointment for a day or so later.
I went home the evening after making the appointment and googled TMS Therapy. I asked on my FB Blog page if anyone had heard about it. I had a few responses. Nobody that really had any knowledge. I read and watched the information on the Neurostar website that was provided in the pamphlet. It seemed very promising. The video in my opinion was very cheesy and fake. I came across the following videos from an excerpt on the Dr. Oz show.
Please check out these videos to learn more:
*Fair warning* Dr. Oz is a bit over the top. Which he is with many things. However, this is one of the best descriptions and "real" videos I've come across so far.
Dr. Oz Transcranial Magnetic Stimulation: nA Cure for Depression? Part One
I received a phone call about a week or two later telling me they had a financial assistance program and I could apply for a scholarship.
I filled the form out immediately upon receiving it in an email and sent it back the very same evening.
It was awesome assistance. However, it still wasn't feasible. I tried to figure out every way imaginable to make it work. I knew I was sliding down a very slippery slope. And needed help soon.
It wasn't long after that my husband had his little mini meltdown (in my ever so humble opinion that is what I will call it). He was faced with having surgery, the possibility of having prostate cancer, and in general he was sick of my shit. I am sick of myself. I can't imagine what those who live with me must feel like. I am/wasn't faking it very well. I know that things were bad. And they weren't getting any better.
My husband was adamantly against using our tax refund towards partial payment for treatment. I spoke to my mom about borrowing the money from them. It wasn't going to be an option. I let the clinic know that we could not do it right now. We have tapped out every single penny and then some with taking out a loan with my shoulder injury. And any more debt was not feasible at this point.
I didn't hear anything again for about a month or two. Just a quick call letting me know that they had received a denial from my insurance company (not a surprise...I knew it was not going to be approved) and they had filed an appeal. However, it could take about a year for the appeal process. She informed me they had requested my medical records from my psychiatrist and therapy notes from my therapist. A day or so later I saw my therapist and she informed me she had received the request. She was not going to send all 13 years of treatment notes. However, did I agree with her sending a letter instead. I firmly believe that is/was better idea. Treatment notes can be subjective to whomever is reading/writing them.
Okay. Fine. I left it at that. I think that was the beginning of March.
Until I got a phone call...not quite a month ago...on a day that I had not gotten out of bed.
It's been rocky at best.
However, treatment has started.
Over the next few blog posts I will write what/how it came about.
Monday, May 6, 2013
My computer is at G.eek S.quad getting fixed. Online access has been limited to my phone and iPad. Hopefully, it will be done today. My dh has appt to pick if up.
The last few days have been a whirlwind of emotions. Many ups and downs. The uncertainty of the next 4-6 weeks and the treatment I'm about to partake in has had my stomach in knots.
On my way to work this am Pink's 'Try' was playing in the radio. It is the reminder I needed for today.
I will blog more once I get my computer back about TMS Therapy, how if came to be, the good, the bad, and how it has/is helping me. Today is day 1.
Thursday, May 2, 2013
After a few months of uncertainty, I will begin a new form of treatment for treatment resistant depression. It isn't something that is well known. I will blog more in next few days. If you follow my FB page you may be aware of what type of treatment.
I will do this treatment! I will not back down. I will be OK. Regardless of how incredible scared I am.
That being said....
I am incredible terrified.
Filled with fear.
Fueled with fear.
Unable to really talk abt any of the fears associated with it.
I had 4 separate doctor appts today. Yearly physical with my PCP whom I've not seen in a year. That brought with it a bag full of triggers.
Chiropractor for my back that crapped out on me this week and had me flat on my back 50% of the last few days.
Occupational therapy for my shoulder.
Last but not least a psych appt....and it didn't go very well. I lost my shit. I was ugly.
I came home and received phone call to set up treatment. Starting Monday. And it has pretty much left me speechless...paralyzed in fear...unable to think rational on any matter.