Decisions

Image by Jan Alexander from Pixabay

It seems like I often stay away from here more than I intend to. I will come here and sit and think of a hundred things to write and feel like none of them are worth actually putting into words. I have some ideas for posts I want to write about that I think are interesting, but I just can’t get those out right now. Things just aren’t settled enough in me to get the words out right, I’m too self absorbed, I guess, to sit down and write about anything intellectual. So for now, if you will hang in there with me, you are going to hear more about me.

I made a huge decision this weekend, I’m backing off on some treatments. Yep, you heard right, I’m so tired of it all I’m taking a break. This is simply taking way too much out of me. More importantly, it’s taking way too much out of Stuart. He isn’t complaining, but I see it. I have at least 1 appointment a week, normally 2, often more. He has to leave work early at least one of those days. If I have an appointment at the pain management doctor he has to take half a day off because it’s an hour away. He also has to do most of the dishes, the laundry….he’s really an amazing man. Luckily we found a housekeeper and she will be coming in starting next Monday once a month to do the major cleaning. We still haven’t finished getting all our moving in stuff straight and we have been here 2 months. I simply cannot do it. We are both so overwhelmed it’s crazy. He’s being made to feel like he’s having to choose between me and work. That’s going to make him hate his job real quick, he’s already talking about looking for another one. I’m freaking out about that. He has to feel better about things. I have to take some of this off of him and the only way I can do that is to remove some of the responsibility from him. Getting rides to doctor’s appointments is not a solution. I cannot hear well enough in the appointment to handle it alone, he has to be there to help me answer questions, and to help me understand what the doctor says. He also needs to be there in case I crash. I often have vertigo attacks due to the stress that comes with these appointments, I would need someone there knows how to deal with that.

I’ve canceled all the pain management appointments, I’ll consider going to another clinic if I can find one closer to us that has appointments at times that won’t take Stuart away from work so much. I do admit I’m having more migraines this month since the occipital block wore off, but it’s not worth the stress of going an hour in one direction to their office. It’s a hard trip, and I don’t really like the doctor. I see my psychiatrist next week, we are normally able to get a late afternoon appointment with her, so Stuart doesn’t miss work, but if I get approved for the Ketamine I’m not sure if I’d have to go in earlier, so that would have to be part of that decision now. I’m changing my primary care physician to a doctor that is very close to me, so I it will be very easy to get there. I don’t think I need to go to a kidney doctor any more, so I’m canceling that. I will keep seeing my migraine doctor, I don’t see her but every 3 months, so it’s not that bad. And if Stuart can’t go, my neighbor said she would take me. I know I can hear her, and I think she will listen to me. A lot of doctors don’t listen without Stuart backing me up, there is definitely a prejudice against women in the medical industry, we have really noticed a marked difference in how doctors treat me when I’m alone and how they treat me when Stuart is there to back up what I’m saying.

There has just been so much going on and I just can’t see where there has been that much improvement. Yes, I do see some improvement, but when you are doing so many things how can you know which one is the one working? I started the Aimovig 4 months ago, they say it takes about 3 months before you can judge if it’s working, well that was the same month I got the occipital block, so I don’t know if the shot or the block was the one working. I think it’s a wise idea to find out which one is helping before I keep spending money on both. I’m also not fond of the idea of continually putting steroids into my body after having avascular necrosis. They told me that it was most likely caused by steroid use and that it’s possible to get it in other joints; I don’t want any other bones to die, having one hip replacement is enough. However, if the occipital block is the one that worked then they can cauterize the nerve and that could last a couple of years. But they want to do an occipital block on the other side first and then they plan on doing injections in my back to help the muscles that won’t stop firing….that’s a lot of steroid injections. I think seeing another pain specialist to get another opinion might be a good idea anyway. I think my back might need some myofascial release. I found a pain clinic that does that kind of thing too, they are only 30 mins away, well at least I’m getting closer…sigh. First I’m taking at least a month off from that kind of stuff. Next I’m going through my medications and deciding which meds I know are working and which ones I’m taking because I think they may be doing something and I’ve been afraid to stop just in case. I’m tired of taking things that I’m not positive are helping. Lots of decisions to be made.

I do have some exciting things I’ve been doing and coming up, including a chronic pain group I’ve been attending and a migraine retreat I’m going to in April, I’ll write about those soon, I promise, but this is getting long. So I’m going to close and get this posted before I decide it isn’t worth posting and scrap it.

Have any of you decided to just take a break from some treatments? I’d love to hear your experience.

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Doctor of Pain

PAIN drawing by W. Holcombe

We have a little joke in our house about how the Pain Clinic sounds like it’s a place where you are going to get pain, a little S&M anyone? It should be called the Pain Relief Clinic don’t you think?

My migraine doctor (a neurologist that specializes in headache disorders) said she was sending me to a pain specialist for my neck pain; you can understand my confusion when I ended up at a Spine and Sports Medicine Center. I’ve been to a sports medicine center before and it was filled with lots of sweaty people doing exercises and recovering from surgery. To say I was a bit wary of this appointment was an understatement.

The confusion ended once I talked to the doctor. This may be called a spine and sports medicine center, but it’s not like any sports medicine center I’ve been to before. Stuart actually said he wondered if they used that name because of the negative connotation association with pain clinics. I think it may also be because they mostly treat people with spine issues. But yeah, this was different.

They took a thorough history, that was very hard for me to go through, I kept breaking down when I was filling out the paperwork as I was realizing just how long I’ve been living in pain.

These are the things, that I know of, that are causing pain to my head, neck, and back area (this does not include pain in other areas). In 1973, at age 10, I broke my right arm and found out I had a bone tumor, that would end up with 5 more breaks, and a major surgery including a bone graft in 1978, leaving me with my right arm shorter than the left and recurring pain. May of 1974 I had my first migraine, two months later I woke with a headache that never went away. In 1991 I fractured my 7th cervical vertebra, and had a severe contusion to the back of my head (I now have arthritis in my neck). In 2016 I had akathesia as a side effect from a medication that has left lasting effects to my back. I hope that doesn’t sound like I’m whining, really I’m not, it’s just the way it is.

After we talked about all my symptoms, the different types of pain, the numbness down my arm… and after we went through all the things I’ve tried to relieve my pain….PT, chiropractic, supplements, Botox, medications, acupuncture, massage….and how little they worked we discussed my next option, injections.

The first injection I’ll be getting is on Monday, it’s a corticosteroid injection to the right and between the C-7 and T-1 vertebra to address the nerves that run down my right arm. Every day I wake up with my right arm in severe pain and it has electrical sensations running down it, and my hand is weak. They decided to address that first. I’m very nervous about getting any steroid injections because of the risk of Avascular Necrosis. I had AVN in my left hip causing me to get a hip replacement, they believe it was caused from steroids. You can read more about that here. She said that most of the injections in the future would not be steroids, so hopefully this won’t do any harm. But what choice do I have? My quality of life is greatly diminished right now.

She sent me home with a prescription for a muscle relaxant and orders for an x-ray. Now I’m just waiting for Monday. I’m slightly nervous about this only because I was asked if I wanted sedation. Why would someone need sedation for this? They give you a local before the main injection. I’ve had major injections in my hips, and I’ve had lumbar punctures and patches in my spinal cord, I was never offered sedation for those. Am I wrong about how bad this is going to be? I had an injection for pain in my neck when I fractured it many years ago, I didn’t have sedation then. I was given something to calm me and it made things a little hard actually because I couldn’t stop laughing.

Have any of you had these kind of injections? What was your experience?

Playing Keep Away with Medication

I’m so fed up.

An article found in the American Council of Society and Health gives “A Brief History Of The Opioid Epidemic” it list what has transpired since the mid-90’s that gets us to the point we are now. Number 6 is the most important “Deaths from prescription opioids alone are rare”. Yet this is what has been attacked. People are killing themselves now because they can’t get their medication to help relieve their pain. I do acknowledge that opioids were over prescribed for a while, the article explained some of that reason. I remember getting prescriptions from multiple doctors, being told to fill them if I needed them. Often I didn’t, but I can see where that could fall into the wrong hands, and that was the biggest problem, they often ended up in the wrong hands. However, this does not mean you should stop prescribing, or drastically reducing, medication to those who DO NEED IT. People are now killing themselves because they have no hope of pain relief. That is a travesty. We as a nation should not be letting this happen. We as human-beings should not be letting this happen.

image by pixabay.com

Caz wrote on Invisibly Me this week that she was not able to get her regular B-12 shot because they are cracking down on it due to
 the ‘craze’ of ‘fashionable B12 injections’ celebrities touting. Really? B-12?!? What does this say about us, we keep people who need a vitamin away from them because of a fad? Jump over to her blog and read her story, it is eye opening.

If it’s not the government it’s the doctors keeping us from our medication.

In my case it’s my migraine doctor (or insurance company, I’m not sure which yet). I had to find a new migraine specialist when I moved to Tucson. I made the appointment before we even moved. I’ve seen him 3 times so far, each time I’ve had issues with him.

During my initial visit he told me he didn’t believe I had every type of headache I have been diagnosed with, until I said, “I don’t know, that’s what they told me at Duke”, then he changed his tune (he also seemed to check over everything with Stuart, to make sure he agreed with that I said, like I would make this up?) My second visit was Botox, which I didn’t really want, but he wouldn’t prescribe the new headache prevention medications until I tried it, at that visit he boasted he could do the injections in less than 2 minutes (very professional there huh?). The third visit was a Botox follow-up, we were interrupted so they could ask if he would see someone who arrived late, he said he would, then when the nurse left he proceeded to tell us how he’s in such demand he shouldn’t put up with things like that. I had to reschedule my last Botox appointment because of the infection I was fighting. My next appointment is on the 24th, I’m refusing the Botox.

I don’t know what happened, but I just got my Maxalt refill and it is for FOUR pills for a MONTH! I have a headache all the time, every day. Because I’m only supposed to take medication for 10 days a month to prevent medication overuse headache I tend to wait until my headaches get to an 8 or 9 before taking a Maxalt, if I don’t then I will run out long before the end of the month. This often means that I will have a severe migraine for days, or weeks, because I’ve waited too long to treat it.

The prescription is normally for 9 – 12 tablets depending on the doctor (my last doctor wrote it for 18, but she was in a headache clinic where they only treat headaches and could get insurance to cover it.) Maxalt is to be taken at the start of a migraine, if you do not have relief in 20 – 30 minutes take a 2nd one, not to exceed 2 in day. So if you end up taking 2 for a headache and you get 9, you will find relief for only 4 headaches and pray the next headache only needs one. When you have chronic migraine like I do, that means you have a migraine at least 15 days a month, did I mention I have a headache every day? So, even if I get relief from one pill each time that still leaves me with …heck so many migraines without medication I can’t even think, that really sucks.

So FOUR are only going to treat 2 – 4 headaches, see the problem?

Right now I honestly can’t say if this is an error, or if the insurance company did something screwy, or what. If the insurance is the problem then that’s a whole other issue, which is also a thorn in the patient’s side.

We should never be made to feel that our medication is being held hostage.

No matter the reason, the 24th will be the the last time I see this doctor.

I am seeing a new specialist in March who is with the Center of Neuroscience. It took me over 3 months to get in, but I’m okay with that if she is as good at my headache specialist at Duke and Carolina’s Headache Center. I’m really hoping to try one of the new migraine prevention medications.

**Everyone should read Kara’s comment to this post it is excellent.

Medical Marijuana, how I got my card

*this is solely my experience, it may be different for others.  I live in Arizona, the requirements can be different for different states, and the type of product offered can be very different also.  You can read a good article about the whole process on Leafly, here.

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As soon as we moved to Tucson I started the process of getting my Medical Marijuana card.  I received it on my birthday (July 2nd).  Here’s the process I went through:

First I had to get an Arizona Driver’s License, thankfully I kept my license up to date even though I hadn’t driven in years.  To get my license I had to prove my identity and prove I live here, I took a copy of our lease and mail that had been forwarded from our previous address.  Within an hour after arriving at a DMV I had my temporary license in hand, after 2 weeks I received my official license in the mail.  Very shortly after that I went in to apply for my Medical Marijuana Card.

To obtain a Medical Card from the Arizona Department of Health I needed to take my medical records that proved I have been dealing with one of the approved conditions on the list for over a year, in my case severe migraines, to a doctor to see if I qualify.   To find a doctor who will do these referrals was pretty easy, I just looked in the local free paper, there are plenty of ads (I actually think this is kind of weird)   I saw an ad that looked a bit more professional than some of the others and emailed them (as most of you probably know, I don’t use the phone because of my hearing loss).  The doctor I saw is a Naturopathic Doctor, she reviewed my records briefly and checked my vitals.  She told me a little about Medical Marijuana, and told me I should receive my card in a couple of weeks.  Oh, I also had to pay a fee to the doctor and a fee to the state, the doctor fee can vary, the state fee is set.  You can get the recommendation from the doctor and then file your own paperwork online with the health department, but I decided to pay the extra little bit to have the doctor’s office do the filing for me, they even took my photo for my ID.  So to break down the cost, the office visit was $100, the processing fee (to have them file all my paperwork) was $20, and the state fee is $150 so the total cost to get my the card was $270.  The state fee is $75 for those with a SNAP card (Supplemental Nutrition Assistance Program)

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Ads found in the Tucson Weekly  (I’m not against recreational use, but if this is a medicinal only state, then treat it like medicine.  The ads like those above give medical patients a bad name.)

 

If you are interested in even more details, this link will send you to the center where I saw my prescriber.  Actually it isn’t “prescribed”, it is recommended, doctors honestly don’t have enough knowledge about the efficacy of marijuana (the different strains vary in what they do, some are sedating, some are energizing, some help pain, some cause paranoia…..there is no way to actually just prescribe marijuana like you do other medications, you have to know all the different aspects of the different strains and delivery methods, therefore they really have no idea how to dose it.  The center that I went to offered a 15-minute Complimentary Consultation to discuss the available types and delivery method for cannabis, and suggested strains to help with my condition.  They also suggested a dosing schedule.  I felt this visit too short, however, since I had already done a lot of research I didn’t need a lot of guidance (or so I thought), but I welcomed the advice on strains and dosing.  The center also offers a couple of workshops, one teaches how to make edibles because it’s much cheaper to make your own, (these are an additional cost).

After receiving my card I visited a Dispensary that is located close to my house. (since then I’ve done some research on the different dispensaries in the area and I will make sure to take advantage of the best deals, it kind of blows my mind that they offer sales, I thought all the dispensaries would have the same prices and the same products, but it can vary greatly.  I should note that the dispensaries are non-profit, however, some also sell paraphernalia, I don’t know if they are allowed to make a profit on that, it seems like they should.

When we arrived at the dispensary someone greeted us at the door and welcomed us in.  We walked into what appeared to be a somewhat large lounge, the actual shop was in another room that had to be opened for me to go in.  Stuart was not allowed in the shop with me even though I told them I needed him to hear, to compensate they had a pen and paper so we could communicate that way if needed.

A very sweet girl met me at the door and gave me a tour of the shop.  She pointed out a cart that contained CBD products only and told me that anyone could come in and buy those, they simply took the cart out to the lobby and had them shop from there.  I noticed that she kept pointing out the strains with the highest amount of THC, they are more expensive, so I was wary about taking her advice as to what I needed.  (I have since been back to this dispensary and another and found the people I spoke with very knowledgeable and were able to really help me figure out which products to try.)

There are so many different types of delivery methods, smoking, vaping, tinctures, transdermal patches, various edibles (from cookies to hard candies), drinks, and concentrates….so much it is mind blowing.  The doctor I saw recommended I use a tincture and vape.  A CBD tincture 10 mg, 3 times a day, as a migraine preventative; and a CBD:THC 1:1 tincture to help me sleep.  It was also suggested I vape for acute pain, since I have a dry herb vaporizer I was given the name of a few strains that would help, I was also given the strength I’d need if I wanted to use an oil vaporizer.  This was a good starting point, but I have a lot more to learn.  This article can give you more of an understanding of what CBD and THC are and what they do: “CBD vs THC: What’d the Difference?”  (I have found the best information on Leafly.com)

 

In my next post I will tell all about what I’ve tried so far, and things I wish I knew before I started this journey.

****NOTE****  I admit I’m very nervous about writing this article.  Please be kind to me, do not treat me as a drug seeker.  I am not looking to get “high”, I simply want the pain to lessen.

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Migraine Madness

headache guide 1a
My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

The Fay Farm CBD Muscle Rub – Review and Give Away!

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“This is a sponsored post for The Fay Farm CBD Warming Muscle Rub. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.”

I’ve never had a review or give away on my blog before, but when The Fay Farm asked me to try their Warming CBD Muscle Rub I thought, “Hey, that sounds really interesting!  I bet my readers would love it.”

The rub was created by the co-owner for his mother who has Rheumatoid Arthritis, he told me that has allowed her to sleep through the night.  I thought that was pretty cool, and so very nice.

I received my package a little over a month ago and I’ve been giving the Warming CBD Muscle Rub a try.  I had been out for a bit the day I got the package and my neck was causing me a lot of pain, so I decided to try it out right away.  I was very shocked when I put it on and the pain got better.  Did it go away?  No.  But it got better!  That’s a big thing for me.

I have degenerative discs in my neck, it has really been acting up lately and the pain from it has been more intense than normal.  The pain is sharp, burning, stinging; all kinds of fun.  It also causes the muscles surrounding that area to become very tense, of course intensifying the pain.  The rub worked very well on the muscle pain, the pain right at the discs bit.

CBD oil is a key ingredient in cannabis (marijuana). Unlike THC (the ingredient in cannabis that gets you “high”), CBD does not cause a ‘high’. While this makes CBD a poor choice for recreational users, it gives the chemical a significant advantage as a medicine.  CBD can come from regular cannabis plants or plants harvested for hemp.  The CBD oil that comes from hemp is legal. The CBD oil that comes from regular cannabis plants is not legal in most states.  The CBD oil found in The Fay Farm Warming Muscle Rub is hemp oil.  Read more about Hemp Oil, here.

The organic ingredients are Sunflower, castor, herb- infused olive oil, beeswax, shea butter, menthol, camphor, 50mg CBD oil, cayenne pepper, arnica, essntial oils of rosemary, eucalyptus, peppermint, ginger, cassia, and clove.

From the ingredients I saw that most have some properties that can help relieve pain, like arnica and the cayenne pepper, ect.  I’ve tried Arnica and things like Icy Hot, Capsacium cream or Tiger Balm… and thought they didn’t help as much as this CBD Muscle Rub..  During the past month I’ve tried Arnica and Tiger Balm again just to make sure, and yes The Fay Farm’s Warming CBD Muscle Rub does help me more than either of those.  I even tried my prescription Voltaren Gel and felt the warming CBD rub helped more. I can really smell the cloves and other essential oils.  Some might find the smell a bit strong, but I found it much more pleasant than things like Icy Hot.  (I have to note here, I’m very sensitive to smells, this is a bit strong to me, but it isn’t artificial or really stinky, I haven’t had a problem with it.  Hubby says it’s a light sent, he also agrees it’s not offensive.  We both kinda like the smell.)

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The rub is softer in viscosity than I thought it would be just looking at it. I thought it would have the consistency of petroleum jelly, but it is softer, smoother.  When I first got it I put my fingers in to get some and I got a lot more than I intended.    Now that I know the consistency it is very easy for me to use.  I’m glad it doesn’t come in a tube because I never feel like I get all of the ingredients out of a tube, and if I happen to get too much on my finger I just scrape my finger over the side and put it back in the tin.  You can’t do that with a tube.

Will it work for you, well only you can decide that, and since you are one of my readers you can receive 10% off your entire order and free shipping (in the U.S. only) by mentioning “Picnic” or “Ants” in the comments when you order you products!  (When you add everything you want in your basket, just add ‘picnic’ or ‘ants’ in the comment section of the order form and you will get 10% off.)  Yes, you get to take 10% off your whole order, not just CBD products, and the offer doesn’t expire.  How cool is that??

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They sent me a normal size and 2 sample sizes so I thought I’d share with 2 of you.  I’m giving away two (2) .5 oz sample containers of The Fay Farm’s Warming CBD Muscle Rub.  If you’d like to receive one of them, just leave me a comment and I’ll randomly pick the 2 names. (if you’d like to leave a comment but don’t want to enter, please let me know) That’s all there is to it.  You have until April 29th to enter and I’ll announce the winner on May 1st.  (sorry but this give away is only available to those in the continental US.)

I’ll also send the winners an email.  Do not leave your email in your comment, I will get it from the information you supplied the first time you made a comment.  If you don’t get an email, you can always check back here.

If I do not hear from the winners by May  6th, alternate winners will be picked.

I hope you enjoy the rub as much as I have, or more!