Well, I finally made it to the pain clinic in hopes to resolve some of my pain issues. I mentioned to Linda what I had been getting in rehab in regards to pain control and how it had been helping. We discussed that though non-conventional, IV Benedryl had the greatest effect. Linda was open to the idea. I basically told her how frustrated I was to go from nearly absolute pain control back to complete out of control pain again. Had I not had the time in rehab and had not had my pain effectively managed, that would be one thing. Prior, I hadn't known pain management. The Fentanyl patch is an improvement over the oxycotin, however, the lowest my pain level has been since coming home has been a 7. In rehab, I was able to maintain a 4 or at most maybe a 6, if severe. I used 4mg po dilaudid ~ 2-3 time/day, and some days didn't need breakthrough medication at all. To me, it is unacceptable to have to live this way. She did not want to switch to 4mg tabs of dilauded citing that she wasn't comfortable with such a huge dose increase. Apparently dilaudid even po is much stronger than percacet. But she was willing to write for 2mg po dilaudid 4x/day. I know that this will probably not be sufficient, but it is a start and a move in the right direction. One of the things I have learned when dealing with the pain clinic is try to be conservative with changes, be willing to accept smaller changes than you suggested in hopes of working towards your desired outcome, make suggestions as if someone else (VVNA, doctor, other person of noted authority other than you) had the idea and thought it would be helpful, back it up with evidence as to why it may be helpful, appear gracious and understanding when agree to change even if it it's not exactly what you were hoping for, and be willing to compromise. Yes, the ideal would have been 4mg but in seeing what I had taken while in rehab, she was willing to switch from Percacet to Dilaudid, which is the important thing. One step at a time. Often this is frustrating. It shouldn't seem necessary to play such games. It shouldn't be necessary to take each step and not just go right to what is known to be effective, as I am the one that suffers in the meantime, but it is the way of it. On the plus side of things, she was open to IV Benedryl as a help for my pain and was willing to write for it, so long as she talked to Dr. Steingart because he basically maintains my port and she wanted to make sure that he would watch things - didn't want me to get an infection, or clot, or whatever and has no knowledge of ports. This seemed reasonable and understandable. So I left there full of hope.
Well my hope came crashing down a few hours later when she called and told me the Benedryl would not be possible. She had talked to Dr. Fejos, who her license is basically under, and he wouldn't let her write for it because it is not "traditional" treatment for pain management. Well honestly, it doesn't get any more frustrating than this. Here is a non-narcotic treatment that seems to help manage my pain, which in my book is a good thing for two reasons - it helps manage my pain, and it is non-narcotic. I hate taking narcotics and being dependent on medication. Then, despite having a valid prescription wouldn't get it because of a possible side effect in the possible future. Then, the pain management specialist was willing to write for it, but was vetoed by her boss because it's not "traditional" treatment. It's all one roller coaster ride - up, down; hope, despair. Of course, we have to remember that I nearly left the pain clinic because of Dr. Fejos.
Interesting to think that I first went there just about 1 year ago. I initially went there because the pain in my bones and joints had gotten extremely sever and none of my doctors would write for pain medication. I was living from ER script to ER script. I had seen a couple of "pain specialists" who were not truly pain specialists. Most were spine specialists. One guy had me in spine surgery within less than 5 minutes of walking in the office. Shook my hand and was like, "so when are we scheduling your surgery?" My surgery? What? Um.... no thanks. No one is touching my spine, thank you. Interestingly soon after that I ended up at Bristol spine and Pain Center. The problem with finding a pain clinic is that most centers aren't truly pain management clinics. They deal with spine problems, or back injuries or accidents. They don't do true pain management and not from a chronic condition such as a primary immune disorder. If you can find a cancer center, sometimes that is best, but some only take cancer patients. Others don't do medication management. How is this possible, you ask. They one do
"interventional" pain. This means spinal shots, never blocks, physical therapy, even biofeedback - no medication. It was so frustrating. The other problem they don't deal with generalized body pain, and my pain affects just about every area of my body. Once you do find a pain clinic, you can't just make an appointment. You have to get your doctor to call in a referral, ect. When you're in massive amounts of pain, all of this is difficult.
Finally, I got into see Dr. Fejos. The first thing that was important to me was that he did medicaiton management - Yes. Okay, good. Then I asked if he had heard about primary immune deficiencies - yes. Another gold star. Had he had any experience with primary immune deficiencies - yes. Maybe two gold stars for this one. Some doctors had heard about them, but few had any experience. Did he have any current patients with PIDD - No. Okay, but there's nothing against that. We are a rare breed. How many patient had he treated in the past. Well none. Wait a minute, I thought you said you had experience. Well, what experience do you have? Well, I read a case study in a textbook back in medial school. The ultimate let down. That's not experience! I went on to talk about my pain. How it was in nearly all my bones and joints and due to my immune disorder. Explained that I'd had to stop doing jazzercise and been in the ER multiple times, and that my pcp was uncomfortable writing for pain medication. He asked what was helpful, and told him 4mg po dilaudid. He then said that it was beneath him to write such a low dose. That had I needed 15mg, that was worth pain management, but 4mg certainly not. He said, that any monkey could write a script and that could be the job of any med student, not someone of his caliber. When I once again explained that my pcp would not write, he said that he would talk to her, but that he wouldn't write such a low dose. Ah .... again, back to no option. I was so frustrated, and in my opinion, case closed. Wasn't going back there again.
Again was living off ER pain meds. I would ration them and when I ran out i would have to go back to get another script. It was not a good system, but I had no other choice. I looked for other specialist but couldn't find any. Finally, I went back to Bristol to try again. This time, I got an appointment with Tammy, the PA. She was more helpful. She ordered an MRI of my hips and spine; my pain originated in my hips. Then, gave me low-dose percacet. The MRI was a disaster. I didn't know how claustrophobic I was until I got in and freaked out; ended up crying hysterically. The MRI didn't show anything earth shattering - some arthritis in my spine, but not much more than that. The arthritis had been expected, and wasn't severe enough to cause the degree of pain I was experiencing. I didn't expect to have ligaments, fractures, or anything like that. I hadn't had a back injury or accident. The problem was deep within my bones and joints. The problem was the chronic, debilitating pain all over. In December, the VNA got involved. They were concerned with the extreme pain level and I was put on oxycotin - a long-acting pain med in addition to the short-term med. Then, I was also switched to seeing Linda, the nurse practitioner. Seeing Linda changed everything. Of course, it also helped that I was able to show her the article that was written about me and lung problems. After reading the article, she seemed to "get it."
It's just so frustrating because in rehab my pain was managed and now it's not. It seems so easy but because it's not "traditional" treatment, they won't order it. It could be standing on my head, and so long as it worked. I'd do it. I just don't want to be in agony all of the time.
Unless a person has lived in pain, they cannot understand the devastating effects it can have. One of my friends termed it, "pain brain." All you can think about is the pain. Sometimes, the pain takes over my body. It's as if I can feel the nerves firing in my body, down my spine. It is unbelievable. Every part of me hurts. It over takes all my thoughts and I think that surely, if this continues, I will go insane. It's unbearable. My thoughts become muddled so that the only thought that continues to exist is the extreme pain. I forget things because the pain takes over everything. All I want is to curl up in a ball and sleep, but I cannot sleep when my body is in such deep pain. I do not want to move because doing so just makes it worse. I fear to even breathe. It takes over my life. I cannot stretch or do pt. It effects your emotions. You get depressed. Everything becomes tainted by it.
When I saw Linda, it was as if she expected the trach to have fixed everything. Before I had severe lung pain. As my lungs have gotten worse and begun to fail, I suffered with severe lung pain. She expected this to be gone. But though the trach has helped my breathing, it has not fixed things. It is not a cure. It will not stop the deterioration or progression in my lungs; however, it will make it easier to breathe. It will give me more time. But my lungs are still failing. They still hurt. The area around my trach hurts, and though she expects that things are all better, this isn't the case. She thought that since being home, my pain would be less than it was in rehab; however, this is not true. At first I didn't understand. I, too, expected it to be less since I wasn't getting as intensive therapy. But it is not, it is more. When I thought abut this, it does make sense. Though I am not doing as much therapy, I am in fact doing more. In rehab, you do therapy, but when you're not in therapy, you are either sitting or laying in bed. Here, I do things all the time. I am in the wheelchair most of the time, but I am constantly doing things. I wheel myself from the bedroom to the kitchen, get my drinks, prepare my food, put dishes away, ect. I am constantly doing things and pushing myself from one place to another. By doing more, this is going to cause more pain. Granted this doesn't change the fact that only a certain amount of medicaiton is prescribed. It is frustrating how others don't understand that. the trach was not a cure. Things are not all better. I just wish what anyone else wishes, to be free of pain.
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