What happens when you have nowhere to turn for help?

My latest pain storm doesn’t seem to want to go away.  It’s like my pain is telling me that this is the new normal.  And I’m not sure what to do about that.

I did some reading on Trigeminal Neuralgia , since I now believe I also suffer from that condition. Reading about the symptoms of this condition in the past made me think it didn’t apply to me, but most descriptions do not include the kind of nerve and facial pain that develop after a head injury.  And I believe both my TMJ and TN were initially caused by a head injury I suffered from when I was a gymnast.  Here are some links that I found interesting:

http://ireport.cnn.com/docs/DOC-1033145

http://www.hindawi.com/journals/bmri/2014/563786/

Funny how researchers and doctors describe TN as the Suicide Disease, and Wikipedia says it’s one of the most painful conditions known to humankind, yet it’s not a condition that’s covered by Social Security Disability:

http://www.tnnme.com/tn–social-security-disability-help.html

At this point, it’s not like I have a lot of options.  It would be a lot cheaper to see a doctor who takes Medicare than to attempt renewal in the Medical Cannabis Program.  But both of those options appear to be dead ends to me.

I’m not interested in surgical or invasive treatments for either condition, so prescription medications are what I can expect from a doctor.  But I’ve tried them all and the chance that a doctor would prescribe the ones that work for me are almost zero. Of course, I can also expect to be treated like a drug seeker and be forced to pee in a cup and sign a pain contract, along with being entered into a PDMP database.  And probably even more useless, painful, and expensive tests. Anyway, I prefer cannabis to prescription medications, but I can afford prescriptions, while I can’t afford the monthly cost of cannabis in this state.

The only other option I can think of is to head down to the part of town where I heard they sell drugs on the street corner, including bud.  And it’s not like this would be the riskiest thing I’ve ever done to help manage my pain, but I would really hate spending money on crappy bud or bud that’s been mixed with other chemicals.  I really thought that moving to New Mexico meant that I wouldn’t have to take any more risks, but this isn’t the first time I’ve been wrong.

I’ve thought about going down to the local Social Security office and asking them for help. But seriously, what can they do?  Give me money?  A day spent at the Social Security office sounds pretty painful to me.

So, I don’t know what to do.  I just know that these pain levels are kicking my ass.  And it appears there’s nothing I can do about it, which makes me feel both helpless and hopeless. This isn’t the first time I’ve felt this way, and I guess it won’t be the last.  But I’m so damn weary…

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16 thoughts on “What happens when you have nowhere to turn for help?

  1. i can imagine your pain level, from my own experience with my back pain during pregnancy and years after. i was literally bedridden for a year. my ex had to carry me everywhere, even to the bathroom. i couldn’t even bear any weight. i begged and pleaded with the pain to just lessen, just a bit, because it was so severe i couldn’t see a future living that way for the rest of my life.

    i can only imagine how horrible and crippling your pain is. i am amazed with how much you still are able to do. it is scary that there is no where to turn, and frustrating. it seems you are on medicare, so are you also on SSDI? or has that been stopped? i would hire a lawyer at a national SS firm, such as Binder & Binder (they did my disability for bipolar disorder) since they will only collect a fee IF they win your case, and they’ll take it out of your award (1/3 of what you get). It seems to me this is a viable option, although it will take a long time to see it thru. You could possibly get approved for another diagnosis, if that is more viable to get approved. Perhaps then other things can fall into place?

    Also, I know you probably already thought of this, but just in case, have you found any resources in your city and county? there is usually a healthcare network set up in the county for those with extremely low incomes. There is usually at least one mental health clinic available, a hospital, a pharmacy (sometimes at the hospital) and an outpatient medical clinic at the hospital, and the county subsidizes low income patients costs, up to 100%. There are also usually food box or pantry sites from $0-$50, there are also helps with obtaining money for rent, for utilities, for phone, and for transportation, including cabs and buses. For instance, here in Phx, if you have difficulty with using the bus, or if you are a Medicare card holder, you ride the bus for half price. You may also use paratransit services if you have difficulty using the bus or have a medicare card. paratransit is a personalized bus just for you. They will send a bus van to your door and deliver you to your destination and back. You may pick up some other passengers on the way or drop some off. there are also services similar to the PHx service of ‘coupons for cabs’. Any city can participate, up to any amount the desire. in Mesa, i can purchase (from the bus company) up to $100 worth of coupons (like checks) that I purchase per month. For $100 worth, I pay them only $30. I can use these coupons with almost any cab company. It is just like paying cash as far as the cab is concerned. I can even pay my tip in coupons. There are also CAN’s (Community Action Networks) in each city, and are there to help people identify resources in the community that can help them. Also, there is United Way and Save the FAmily and of course, applying for Section 8 or section 8 vouchers. Some places are completely section 8, while others are regular non government apartments which accept those who have a voucher for section 8. Vouchers belong to you, whereas a section 8 apt. is always only section 8. you don’t need a voucher, and if you move, you leave section 8 unless you first get a voucher.

    i know you probably already have done these things, but i just wanted to say them just in case any of them can help you right now with anything to make it easier for you.

    Liked by 2 people

    • I was approved for Social Security Disability many years ago, but I recently learned it was for Major Depressive Disorder and Fibromyalgia, two conditions which I don’t suffer from. I wrote to Social Security and Medicare informing them of this fact and asked for my file to be updated and corrected, which means I could also lose my SSDI benefits since chronic pain, TMJ, and TN aren’t covered. So, thanks for all this info — I might need to use it. 🙂

      My SSDI is enough to cover the essentials but not including paying for medical cannabis. In fact, my benefits are too much to qualify for Medicaid. I need to save every dollar to prepare for a move to Colorado, so spending money on nonessentials like useless doctor appointments, haircuts, and car washes is just a waste. But it’s going to take me years to save enough money for a move, so what am I supposed to do in the meantime?

      I am also amazed sometimes at what I’m able to do, but my latest trip to the grocery store was so hard, I wonder how much longer I can take care of myself. And when I can no longer take care of myself, I have no one to turn to for help. We are both on our own, friend.

      Liked by 1 person

      • well one of the links you shared last night did demonstrate a person getting approved for chronic facial pain from TM, so it is possible to be approved for it. still i think if they do cancel your SSDI, you could reapply using a lawyer for the TMJ and TM chronic pain and likely get approved. and ya, what is the next step when you (or anyone) can’t manage alone? that would be a good place to start researching, too. wishing the best for you.

        Liked by 1 person

  2. I didn’t have time to click on the links but had a quick look at the NHS website and Trigeminal N sounds horrendous. We are so lucky in the UK to have NHS healthcare. I really do hope you can manage to sort the pain out

    Liked by 1 person

  3. Damn, I feel for you. I could not live my life without my opioids, so I’m impressed with your courage and tolerance for pain. But I know we need more in our lives that just “tolerating pain” and I wonder how long you can continue like this.

    No matter how tough we are, persistent uncontrolled pain (which usually gets worse as our bodies age) wears down body, spirit, and soul until there’s only a shell of a human being left. I’m so angry that this is happening to you!

    Pain running amok makes me crazy: I’ve spent some time literally banging my head against the wall in frustration and agony while waiting for pain meds to kick in (can take up to 2 hours). When I was once being “weaned off” my pain meds for a couple of months, I was scratching deep gouges into my arms just to create a different sensation during my terrible visceral pain flares.

    Some might say this is a sign of mental illness, but I feel justified because pain can become intolerable. My self-injuring behavior is a temporary distraction to keep me from reaching for the “final solution” at those times.

    Liked by 1 person

  4. hey my dear 🙂 I think you posted about tmj and tn not to long ago and i read it and from what you said and what you are going through i am so sorry for your pain(i have tmj and it sucks ballz) …my heart goes out to you gurl …it really does I wish that i could do something for you ..just know if you really need to talk one on one about anything just shoot me an email on here and mark it and i will get back to you…or just talk on here…your call

    I have had my fair share of head injury as well but never knew this could cause more problems like what you have my dear you are a strong gurl to go through all this…i wish that i had a solution for all this pain that we go through i really do ..it is hard to live life everyday with pain always knocking on ones body…it is a bastard…

    To have a name as such “suicide disease” is scary since from my pain i have thought of doing such (only boyfriend and father know this) to be in such pain and nothing to give you relief or to get relief is so scary sometimes i feel like i am going to loose my fucking mind and to have what you have omg gurl….and yes you are so on point about being treating like a drug addict when taking pain medications pee in a cup etc …when we just want to live!!!!…i am so glad bud helps you my bf smokes it when his cvs acts up it is the only thing that will help it…so i get it…but not legal here YET!…im reading this and it scares me that you may have to find it on the streets just to get some relief but i do understand…just be safe please….i know you not stupid ….i wish you pain relief gurl i really do…just know that you are not alone in the way you feel and what you are going through….maybe try to appeal your disability case? make an appointment and go from there? they turned my bf down as well he even hired a lawyer fuck i just wish you luck and i know it sucks all around….we do not have many rescorce here at all not like the one person that made a comment…i hope that maybe you do where you live…..

    so ok i know i am not much help at all…just know that i do care and that i am sorry that i can’t help….
    hugs suzy Q

    Liked by 1 person

  5. I have a friend who, for different causes (upper spinal malformation) is in a similar position of desperation and helplessness in trying to manage pain when normal medical approaches seem to be fruitless.
    After some discussion and research I purchased some liquid CBD, or ‘Hemp Oil’ as it is labelled, for her to try.
    As I’m sure you know already this is the ingredient that is reputed to provide pain relief and relaxation of the body (the psychoactive ingredient THC has been removed from the end product) since this is legally available in the UK.
    We’ll have to see if it works and I’ll keep you posted.
    If you have any experience of this I’d be interested to know. Apologies if you’ve already covered this.

    Liked by 1 person

    • I tried a high-CBD strain from one of the dispensaries (the smokeable version), but didn’t obtain any benefit from it. There are many different CBDs, some of which work as anti-inflammatories; but for chronic pain, THC is usually needed for some level of relief. However, there are some patients who don’t like the “high” effect of THC and have received some help from the high-CBDs.

      The hemp plant doesn’t contain the same CBDs as marijuana, which is one of the reasons it’s considered “legal.” I’ve read a lot about the scammers selling hemp oil, trying to bypass the legality issue, so I would never try a product like that. I’d be interested to hear how it works for your friend.

      Liked by 1 person

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