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trialsofaninvisbleillness-blog · 6 years

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The Journey to detox

#The beginning of my year started with me getting on my husbands insurance and starting all over with new doctors. After 18 years of increasingly new issues and having doctors ignore those issues or say they are just in my mind, has taken a toll. Oh, and let’s not forget all those doctors who think that just because you are on narcotics for pain, that you are a drug addict. My last doctor, whom I had for four years, was always trying to find me using other drugs, or not having Fentanyl in my system so he could say that I am faking my symptoms and selling the Fentanyl for money. Four years of constantly showing him I am in pain, but him not believing me. It is beyond frustrating. He also didn’t want to do anything to help me, he would procrastinate coming into the room to see me than he would rush my appointment as quickly as possible, always telling me that he is going to have to stop writing our my Rx for Fentanyl soon and he didn’t care about getting me anyone to help support me through the transition and then to help me with the pain. He would write out any nreferrals I wanted, but I had to do my own research and tell him what I needed. I didn’t know I needed a medical degree to make sure I am taken care of properly and the way I deserve.

Starting this year with new insurance and new doctors has been a struggle. It started with issues with the insurance. Someone at the insurance company put the wrong information down in the computer and that caused a couple of weeks of phone calls and fighting to get the very necessary doctor’s visits covered. I swear if it isn’t one thing its another, you know?

My new doctor is nice and always has a smile on his face, even when he is seeing me, which is a positive step, because I am use to scowls. Lol My new doctor was willing to write prescriptions for my medications, all of them, except the 50 mg of Fentanyl. In Oregon it is necessary for a doctor to have a special license to write a prescription for narcotics, which he doesn’t have. I left with my prescriptions being sent to my pharmacy and a referral to see a pain doctor. Since I only had a couple more weeks of pain medication I needed a doctor I could get into right away and couldn’t wait 6 months for any of the more popular pain doctors. In hindsight that should have been a red flag, but I was so desperate to get my pain medication. I did not want to stop doing Fentanyl cold turkey, especially after being on it for 8 years.

When we met the pain doctor a week later we, my husband and I, thought we found someone who would help me. When I called to make the appointment the person who answered the phone said I had to get off of my 50 mg Fentanyl and if I didn’t want to there was no reason to make an appointment. Of course I wanted off of Fentanyl. I had to spray allergy medicine under the patch so it wouldn’t burn my skin, and so my body would absorb the medication. I also hated the fact that every third day was going to be a bad day. I wore the Fentanyl patch and by the end of the second day I could feel the pain medication decreasing in my system as I started to hurt more and more and became even more fatigued from the pain. It wasn’t fun planning around that third day because it was going to be a day on the couch. That third day decreased the amount of time I could work around the house, go out and explore, enjoy time with my husband and dogs, and the list goes on that third day interrupted. We had to make sure all plans were made on the other days, preferably the first day on the patch because that was my best day, if I was going to have one. My third days got so bad I started to circle them on the calendar so we would know what days to leave open so I could just rest. I had absolutely no problem telling the lady I want to get off of Fentanyl, with help, of course. I remember the doctor just staring at me the whole time.

When I am in a lot of pain, and fatigued, my voice goes. The more pain I am in and the more fatigued I am, the less of a voice I have until I have no voice left at all. When I mean no voice at all, I will text my, husband or family, who are right next to me, but still can’t hear a word I am saying. It really is the strangest sensation moving our mouth but no sound is coming out. I have been without a voice, or barely a voice, since November of last year. My husband calls me ‘Squeakers’ now, because I squeak, when I have a voice. The more I hurt, the more I walk like an elderly lady. My back hunches over, I walk very stiffly and very slowly.

Through the whole hour long appointment with the doctor he just stared at me, asking questions. We were upfront with him and told him I want to get off of Fentanyl and stabilized. Once I am stable I want to go find someone who would help me with a pump, and who also works with a new pain medication, a non-narcotic, that comes from a sea snail. This new medication, called Prialt, is not a narcotic because it works on nicotine receptors in the brain, even though it is related to some different pain medications. The one issue with this medication is it is very tricky to get the right amount in the system for pain control. The doctor said he has a friend up in Washington state who works with Prialt and would refer us up to him, once I was off of Fentanyl. I was very upfront with the doctor, telling him I want off of narcotics for my pain, and that I want help with alternatives until I can try Prialt and see if it works for me.

After the oral interview he did a physical. He checked out all the areas where I hurt, from my neck down to my feet. He then verbally told me I had fibromyalgia. I have been told for the past 18 years that there is no way I have fibromyalgia. I couldn’t wait to get home and research fibromyalgia. I couldn’t believe what I read. It was me, I couldn’t believe it. Me on a page…..well, pages. I started researching more and more about fibromyalgia, reading what other people were going through who have fibromyalgia, and I really understood what everyone was saying. I felt like we were living similar lives. I felt like I had been alone for so long, it was wonderful finding other people to talk to who were going through what I was going through.

At the end of the appointment the doctor told me that he knew I ‘wasn’t drug seeking’ which meant the world to me since every other doctor had thought I was a drug seeking addict. I actually thanked him for saying that and believing in me. What a fool I was, but that is a whole other story. We had decided that because I had been on a high dose of Fentanyl for so long, plus I said if I had to detox without any help and without any medication to go on after the detox, I would kill myself. My pain is so bad, I can’t even think about being without something to help with it. The doctor said my pain was probably worse because the narcotics were making my pain worse. Fibromyalgia doesn’t do well with narcotics. I started the narcotic path because nothing else helped my pain, even in the very beginning. And my pain only got worse over the years as I tried anything and everything the doctors suggested. Anyway…….

So the plan was to detox as soon as possible. The doctors assistant was still in the room when he left because she was giving me the information on detox centers. She said the doctor never diagnoses anyone with fibromyalgia and that he doesn’t like to even use that word, so saying I have fibromyalgia was a big deal. The assistant also said a lot of people say they are going to detox but don’t, so she hoped I was one of those that was actually going to follow through and go to detox. We left feeling like we finally were going to get the I had been trying for.

The next morning I tried calling detox centers who would help to take me off of fentanyl while starting me on siboxone. The places we called no longer were doing that type of detox, they were just working with people who were off of drugs and staying off of drugs. We finally found a place who would accept me, after calling the doctor up again for more detox centers and informing him that the ones he gave us are not good referrals for his patients anymore.

The detox center I found was able to fit me in right away so we took the weekend to buy some of the stuff I would need, such as reading material, appropriate clothes (pants cannot have belts or strings, all of mine do) and hygiene products. My husband than drove me to detox on the following Monday. When we got there it reminded us of where we use to work, and where we met, at a locked down facility for youth with mental-health issues. Patients had just come from the hospital, a couple people had just come from the streets and all their belongs were in plastic garbage bags. I saw one of the intake counselors spraying down a table after a patient went through the intake process. When I saw that I knew that it was for lice. We were definitely seeing red flags, we weren’t sure if I was appropriate for this detox center but I just really wanted to get off of the Fentanyl so bad, I could taste it.

I was called back for the intake and they put tags on my belongs so they could be searched later and than what wasn’t confiscated would be given back to me. This was all stuff I use to do as a crisis counselor working with homeless youth. It was so unreal being on the other side of having my personal possessions searched by a stranger. So unreal. My vitals were taken and my blood pressure was so high!! I normally have super low blood pressure, even when I am in excruciating pain, my diastolic increases, but my systolic stays low. My blood pressure is so low that I am dizzy a lot of the time and feel like I am going to pass out. So for both to be over what is considered normal was a first for me. At this point another intake counselor came in and saw on my intake form that I was only authorizing my doctors to get information from them, not the police, a parole officer, a lawyer, or anyone else in the law enforcement field. She asked me what I needed from them and I told her to be taken off of Fentanyl and put on Siboxone for pain treatment. She said they no longer do that. I didn’t understand since the person I talked to said they could help me. The female intake counselor called her supervisor to see if they could help me. She told me they had just closed that program six months prior. When she got back to me she said they couldn’t help me there, that if I detoxed there I would be leaving without any pain control to help me. We quickly got my belongings and left.

The next day there was another call into the pain doctor to update him on the latest detox center and for more options. I was having a problem talking, my voice was basically gone and people couldn’t hear me over the phone. Luckily the detox center I was trying to contact had an email to contact their head therapist with. I emailed the therapist begging for help, I quickly gave him a synopsis of what I was going through and he said that he would talk to the doctor and the director of the facility and see if they could help me. Besides the pain I have other health issues that make me coming off of medications and trying new medications tricky. Luckily they said they would take me on. I was the first person to attend the detox center that was going to be leaving on pain medication.

We talked about how the war on prescription drugs and how doctors are reacting are going to have more people needing to detox and leave on a more ‘appropriate’ pain medication. I was going to be their guinea pig, which I am use to being, so it wasn’t a big deal to do. I am always willing to try something new and even if it may not be a good fit for me, if the information gained can help others, I am good with that.

I am one of those people who need to help others, and since I can’t work right now because of my chronic pain and chronic fatigue, I need to find some way to help. Having chronic pain for so long has helped to make me who I am today. Everything I have gone through, from a small child to an adult, has changed me as a person and turned me into me. I do like who I am, I am a fighter; I always have been, but now even more so. I have also found out I am really strong mentally, more so than I have ever been. I swore to myself I would not let my health issues rule who I am, I am who I am despite them. Grated there are times the health issues may win a battle and have me in bed or on the couch for a day, or a week, but I am going to win the war.

It took a while to get into the detox at Serenity Lane. Due to family visiting and the therapist wanting to be available for counsel while I was detoxing since I was a going to be the first for them to detox and then put onto a new and appropriate pain medication. Luckily I was able to talk to my old doctor and told him that this was a one- time visit and that I was going to detox, he said he would write me one last prescription. Yay!! What a relief, I can breathe until it is time to detox.

Looking back I thought nothing could get worse than it was and after I detox everything will be looking up. Of course there would be a lot of change, but if we can work around my bad chronic pain and chronic fatigue days, we can do anything. I must admit my husband was more hopeful than I was. I am one of those people who hopes for the best but plans for the worse. I know that seems to make me a negative person, but I really am not, I am actually very positive, but I am also a realistic. In the past whenever I have gone through any changes with my medicine or with my health, bad things tend to happen. But there is always a first time, right? A month later I left for detox in Coburg, Oregon.

#chronically ill #chronic fatigue #chronic pain #invisibledisabilities #invisible illness #spoonie #spoonie warrior #chronic pain warrior

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