Saturday, December 7, 2013
I’ve had a much needed and blessedly appreciated break from the non-stop pain…it’s actually been about a 5 or 6 on the 1-10 scale for about four days…that’s a record, I assure you. Even though the temp outside is below freezing (very, very rare for Seattle but then, the rest of the country is experiencing weather-related horrors as well) the sun has been out and high pressure outside means less pressure in my body. I know, I know, why not live somewhere sunny? Well first, even when the sun was out this summer it was also humid so I still was in pain. And dry climate or not, I want to be where I am.
So when this happens, I start to really lie still and pay attention to my body; where does it hurt, what is the intensity, what changed to make it better or worse, etc. Stress obviously makes things worse. And my M, W, F caregiver quit on me Monday. She said she’d stay until they found someone else, and they did, right away. It wasn’t personal; it was family issues. She had a bit of an angry aura about her and I questioned whether I wanted her around, so I guess it always turns out the way it’s supposed to, right? So whether I am aware of it or not, stress pays a huge factor in the pain game. And knowing they are planning on lowering my dosage is very stressful
But I also wonder about my interpretation of the pain. When it’s tolerable I try to really feel how it feels so that I can compare it when it’s zipping passed 10 on the pain scale. But when it is zipping passed 10, I’m in no mood and have no ability to compare or even remember what it felt like before it went into the war zone. So it’s tough. The only thing I can do, the only thing any of us can do, is live in the moment. And that’s tough when the moment is filled with burning pain.
Like the rest of the country, it’s very cold (way below freezing) here right now. Seattle isn’t used to this kind of cold. My car won’t start much of the time and I’m going to have to get out there and start it again. And my poor hummingbirds; their feeder was frozen solid so I brought it in and warmed it up then changed the water. That was two hours ago and the top half is frozen again. The sun might warm it up a bit, I hope.
Posted by Sherri at 12:39 PM
Friday, November 29, 2013
My dad, brother, sister-in-law and niece came over today with leftovers from Thanksgiving. My dad is a very brave man; he has spinal stenosis and is in the same kind of pain I am in yet he manages to get over here if he has the chance. Of course, he can sit and I can’t….we were all talking and I started crying and said I didn’t know how much more of this I can take and felt horrible for saying it in front of him. He came up with “Spinal Crap” and we all had a good laugh . Old movie “This is Spinal Tap”.
I took a few moments with everyone and went over my DNR. I hated doing it in front of my dad, but I wanted Francine (my sister in law) to just take a look at it as well as my brother and there is just so little time. I want to send it back to the doctor to sign and send me an original. I wrote a short note to the doctor and nurse about it as well, so they could see I understand what I signed. I also made it clear to them that I am not considering suicide.
My nephew called shortly after they left but I put his visit on hold. Hopefully, he’ll be able to get here tomorrow; after that, he goes back to school. Then a friend called and offered to drop by. I took a pass on that as well. When the pain is in the stratosphere, I cannot enjoy the people I love. It used to be a distraction at least, but not right now and maybe never again. I mean, this stuff doesn’t get better.
Then, after they left, I watched an episode of “Bones” on Netflix. It happened to be the one with the NF information and tiny story line. I cried my eyes out. My stomach has been awful; I have no appetite (again) and I am forcing myself to eat something, anything, to get the juices going again. But if I want out, why am I doing this? Well, my heart may be in heaven but my soul isn’t finished, I guess. No wonder I feel confused, betrayed, frightened and sick. My heart and head are in one place, my body in another, and my soul? Who knows. Driving me crazy, mostly.
Posted by Sherri at 4:47 PM
Sunday, November 24, 2013
I have this fantasy about who I am. In my head, I see myself as someone who can take anything thrown at her, but in truth, I am not.
In my head, I see myself as someone who doesn’t complain about the myriad of health issues I face, the main one being pain; but in truth, I do.
In my head, I don’t tell friends and family about those challenges but just suck it all up; but in truth, I tell.
In my head, I take each day as it comes and not worry about tomorrow; but in truth, there is a wide gap between me and Ram Daas.
A dear friend just took me to the store. The pain was bad and we were coming up to a green arrow and I was afraid it would turn yellow and force us to stop. It was a long light and sitting is horrendous for me so I said “go, go, go” and she got mad and I don’t blame her. She said I could give her directions if she needed them but not that kind. She said she remembered telling her dad the same thing. Great. Now I’m not just a bitch, I’m an old bitch. But she was right.
I used to have the same conversations with Pam…I don’t do that anymore (usually) with the new helpers. It really doesn’t matter how much pain I’m in. They have to drive safely. But I’m inside so much I forget what it’s like to be out in the world. My patience is nonexistent and it’s just too bad. But taking it out on everyone isn’t the answer.
Of course, all these feelings come and go and change with the weather and my level of pain. The trick is staying in the moment, remembering the Serenity Prayer and praying for other. The trick is meditation, BioLateral music, my healer, healthy eating and a bunch of other stuff I slip in and out of. The trick is remembering the tricks.
At the moment, I think my anxiety is about my lowered dosage which will start in January. Gotta stop worrying about what may or may not happen come January. And just leaving it alone with my pain doctor until it’s time for the next battle. Need to rest up for that!
Posted by Sherri at 12:24 PM
Saturday, November 23, 2013
I’ve been reading my DNR (do not Resuscitate ) papers that my pain doc finally sent to me. I am not happy with the box he checked (I want comfort care only and my family knows it...he checked the one that includes breathing apparatus). I understand that he feels culpable if I should take my life, but I’m not going to do that BUT I am also through fighting. I wrote him and his nurse a letter explaining and he may make me get it from my primary care doctor. I just know I want it.
I don’t want to be a wuss but enough is enough. People call me “strong” but I’m not anymore. I keep winning battles but let’s face it; none of us will win the war. What is the big deal about this anyway? We treat ANIMALS with more respect. We don’t give them some pain medication that doesn’t work, stick them in a shelter and force them to live their lives until their bodies give out. It’s cruel, unnecessary and should not be an issue.
After all, I am not talking about euthanasia, though I am not sure how long I’ll want to live once they lower my pain meds. They told me it “wasn’t good” for me to be on them for long periods of time. A month ago they wanted to raise them and that was too much. Then the nurse balls me out for not taking “enough” of my breakthrough meds. Now they lowered them as well.
I feel like I’m losing my mind. They are generally supportive and gentle, but this constant change of attitude about what they want to do is miserable to deal with. I do not want to start with a new pain doc, and I have to tread lightly or they will tell me to go somewhere else. It is beyond maddening.
And don't even get me started on the continued fallout from having my meds stolen. I'm sure that's part of this, though they swear its not.
Sorry I've not been my usual one day at a time kinda gal. Doing my best....friends, family, roof over my head....I am thankful for all these things, believe me. Staying away from the news has been a challenge though. Makes me grateful, fills me with fear. Sigh.
Posted by Sherri at 3:17 PM
Friday, November 15, 2013
Lately, I have been sleeping very poorly. Then, last night, or should I say, the “witching hour” I woke up at 3 and stayed awake….and in horrific pain. I even took my breakthrough pill at 3. I was going to take two, but since the pain clinic decided I need less, not more, I didn’t do that. In the beginning the limit was 6 a day, which I never reached. Now that I need, they want me to take 4. I know they are worried about my weight, but hell, I could probably swallow the bottle and still not get relief that theory will not, however, be tested. If I ended up brain dead instead of dead dead, my family knows I have a DNR, no extreme measures, etc., but still. I will not put them through that. I almost got up to write this, but wanted to give sleep a fair shake.
I managed to meditate a little which did help, but no sleep. If I’m repeating myself, just ignore it. I probably do that anyway!! No blaming lack of sleep for those senior moments. So I decided yesterday to write a “Day in the Life for One Woman in Chronic Pain” and put it in the pages section. I have to listen to my BioLateral music while doing this. I don’t hold much back. It’s longish, so it’s under “Pages” instead of posts. You’ll find that on the right side of my blog if you’ve never been there.
Posted by Sherri at 9:27 AM
Monday, November 11, 2013
I had written another entry but it was so negative I got depressed reading it again (I always wait a day before posting) so I’m trying again. Truth be told, I am in a world of hurt. Lying down doesn’t even help anymore. I’m in pain, scared and worried about what the future holds. I am really worried about them lowering my pain medication. That will start when I’m done with the few patches I have left. I know they are worried about me being on this dose long term, especially with my weight being what it is. You’d think it would work better since I’m so thin. No such luck.
I know I’ve often written that pain and suffering are two different things, pain being something the body just does, suffering being our interpretation of that pain. And I think about the people worse off than me and give thanks for what I have. But that doesn’t seem to be working much anymore. And the stress of what happened with Pam, plus the fact that they are decreasing my meds and I’m completely freaked out isn’t helping my pain levels. I try and let go and release the tension and I’m usually good at doing that but not today.
I am listening to my BioLateral tape while I write this. I’ve taken as much as I can take for a while, pain wise and it does no good anyway. Once the dosage is lowered I may as well move into an opium den. I’m not kidding. My legs are killing me and I have barely been off the couch all weekend. So I forced myself to run to Trader Joe’s with Barbara this morning. I’m glad I did just for the getting out of the house part, but I’m flat out again. I did eat a little soup and a bit of stir fry from last night. Baby steps. I AM SUCH A DRAG. I have zero idea why I have the friends I have. Seriously. I mean, when they visit I try to be upbeat but there isn’t much to do except watch a movie. It’s not like they climbed a mountain to see the Buddha.
Barbara, one of my new helpers just left. She really cleans well and is kind hearted but not intrusive. I enjoy our conversations and she knows when I’m not up for them. And I make sure she’s up for it if I’m feeling chatty. Oliver is trying to will me to give him another treat. Will away, my love. Mama’s down today. He is especially cuddly. G-d, thank you for sending me Oliver. The best of the best. I hope his extra cuddling up to my neck isn’t a goodbye. He’s been doing it a lot lately.
And you know what? I think of Pam, I pray for Pam, and I seriously hope she gets help and finds some peace.
Posted by Sherri at 12:40 PM
Sunday, November 3, 2013
I’m lying here (what else?) thinking about all the years gone by, all the pain that never ceases and am thinking about everything from my almost 19 year old cat, Oliver (who at present is screaming for treats but will not get them because I’m in horrific pain, I’m alone, and jumping up every 10 minutes is exhausting), to what happened with Pam. I heard back from the Officer who took the information and he told me she has to go into treatment and stay clean a year and the charge would be dropped. I asked if it was okay just to call and speak with her. No contact in person, but a call would be fine.
We spoke for just a few minutes and she told me she was actually seeing it as a turning point and a wakeup call. She said she understood why I had to do it and that she had left me with no choice. I told her my angst over it that first weekend actually stopped once I turned my prayers away from me and on to her. She cried. I cried. And we said our good-byes over the phone, promising to get in touch again in a year. I hope she succeeds.
I’ve been having a very difficult time lately and thus have not been writing much. The pain has been horrific, and Tuesday I have to get to the doctors, a 40 minute drive each way. The new person got permission from the supervisor to take me there (it’s in the next county so a no no) after I spoke to her and said Pam was the reason I had to go. Which is true; they scheduled it based on how much they thought I was taking and when I told them what had happened they still want me to come in. My next scheduled appointment will be a different challenge, but that won’t be for another six months. By then I may have someone new willing to do it without needing permission. Usually when I offer to pay for the extra gas they agree but this woman, Elaine, would not. That’s okay; she has integrity, which matters to me a lot.
The emergency replacement worker was a doll. She is originally from Sri Lanka but is married to an American and has lived her over 20 years. She was a nonstop chatterbox, her cell didn’t stop ringing though she didn’t answer it, and she had all sorts of dietary suggestions. I told her to email them to me since she isn’t going to be my regular. So I have Elaine on T, TH and someone I have not yet met, Barbara, M, W, F. I am going to have to be careful scheduling appointments based on their work schedule.
Lots of changed which equal stress which equals pain. I always think I’m doing well when I’m not. But two friends came over last weekend; one on Saturday and one on Sunday. I watched “The Sapphires” which I highly recommend…about an aboriginal singing group from down under that were never famous but they sang all over for the USO during Viet Nam. They only sang music that was popular then, but the beginning of the movie you hear them singing songs like “Yellow Bird” Amazing.
Posted by Sherri at 10:53 AM
Tuesday, October 29, 2013
Just a quick note to let everyone know I did report Pam to her boss, my doctor and the police. I felt pretty bad about it, but they betrayal helped me stay focused on what I had to do. It's been an awful few days and I'll write more later. BTW, I was left with no choice. My docs needed to know I wasn't taking that many and they already won't let me have my full supply anymore. Perhaps I can talk them into not doing that since they now know I'm not taking them and forgetting about it. It was a real mess. But I have been praying for her to heal and you do the same.....if you want to.
Posted by Sherri at 8:31 PM
Sunday, October 27, 2013
Nothing is ever certain in life. No one knows that better than those who, for no fault of their own, have medical problems that are unsolvable to date. And those who live in chronic, intractable pain due to their disease or disorder must depend on, and trust, caregivers. So must those not in pain, but the meds for pain are what everyone wants. And caregivers are notorious for unpredictable behavior.
I thought I was the most blessed of those who need help. Sure, Pam could be unpredictable in some ways, and yes, she was getting flakier and flakier. But Friday she admitted to me she was the one taking my meds. She claimed she only did it a few times, and they are under lock and key so I didn’t get it. But I always have a dozen or so in my purse. Which is always with me. Except, a friend said, when you are in the bathroom. Which is often. I told her to leave, we were both crying, and all weekend she has been phoning and leaving notes on my door. When you do that to someone, the trust is broken beyond repair. And she doesn’t get it. She wants me to lie to her supervisor and just say I want someone else for personal reasons. But she has been going through red lights, forgetting things I want at the store (once I only had two things…and I always write it down….she called from the store because she lost the note and my pin number) and she came back with just ONE of the two things. So all in all, it’s time for someone new.
But the despair I have been feeling all weekend has been overwhelming. So has thinking about the work ahead of me, dealing with my doctors who will not be happy (already left the message) and I haven’t a clue what will happen. And the most important thing is that I will be out completely and not due until Thursday. My nurse said she wrote a script to tie me over but the pharmacy wouldn’t fill it and won’t until Thursday. I’ll have her call because I’m in agony as it is. I don’t care how well you know your caregiver, you must be hyper vigilant all the time. If not, this is what it will cost you and it's what I wrote to Pam in response to her notes…I haven’t had her in the house since.
· My pain doctor thinks I am taking more than I realize and therefore, I need to tweak my pain plan. While the pain has been bad, I am NOT taking as many as I thought (and forgetting). This loss of pills is why they want to see me next week.
· They may drop me as a patient
· My insurance will not fill my order until it’s due, and I now don’t have enough to get me through If I DO tell them, I have no idea what they will do about it. I have no desire to prosecute, but they may. And I MUST tell them because I don’t want them thinking I’m forgetting that I take them…they are changing my pain plan needlessly
· I no longer trust you. And I think you took a lot more than you realize because of the sheer number missing (she originally told me I was 80 short so I’m unsure)
· I now suspect you were in my pills before I started locking them up…again, the trust has been broken. It doesn’t matter whether I’m right or wrong. When you look me in the eye and lie, how can I trust you?
· I don’t want to go through the process of training someone else, but what choice do I have?
· You could have had a bad reaction to my drug….and if they found morphine in your system, they’d come after me (even if you said you took them…I’d be in trouble for not keeping them locked up…even though I only have a small amount on my person)
Stay strong. Keep fighting. DO NOT TAKE YOUR EYES OFF YOUR MEDS regardless of how much you trust someone. As my pain doc’s nurse always says “They’d kill their own grandmother and lie to your face”
I don’t know if she killed anyone, but she did lie to my face; I asked her point blank on two occasions. It wasn’t until she heard me crying that she tearfully confessed. The thing is, I under medicate so that’s why it took all this time to notice. She claims it only happened one time right after her surgery. I’d love to believe her. I unfortunately, do not. I feel awful, I have been struggling all weekend and praying for direction and strength. Every single person I spoke with, and I spoke with at least seven, told me I have to tell her boss. I don't even want to think about what would happen if I don't and she does this to someone else. The trust is gone. GONE
Posted by Sherri at 6:43 PM
Friday, October 25, 2013
I just got off the phone from another frustrating “Medical Who’s on First” conversation. I had an MRI of my stomach and pelvis about three weeks ago and had sent the results to my pain doc and neurologist. My pain doc nurse and I had had a conversation about my meds and I mentioned the scan and she told me to send it to her and my neuro. The next communication with her came when I called to renew my scripts. She said they won’t look at the MRI unless I’m there so they can get paid. Fine. I get that. I am due anyway, so I made an appointment. Then I called my neurologist and left a message with the information about how to access the scan that was sent.
Today, after not hearing back all week, I called again and had to start all over They had no idea what I was talking about. I explained the scan was of my pelvis and stomach and my pain levels changed and I want my doc to look at it.
She asks “so you want to see him about an image of your brain?” ARE YOU EVEN LISTENING TO ME! Where in my speaking did I mention coming in with images of my brain???? I told her I was sick and tired of fighting for my life and having conversations like this makes my pain worse and would drive anyone crazy, but when you are in the kind of pain I’m in its intolerable. Then I asked if she had heard anything I said because the questions you pose don’t match with what I just said. She started paying attention then. Telling a health worker, even a receptionist, that you are sick of fighting for your life should be a red flag for them but at least they will call back this time (hopefully)..and tell me to come in….even though I explained how hard it is to come in and I’ll be there next week for the pain doc. So no, all I want is for him to look at it. Send me the bill for the five minutes it should take. AUGGGGHHHHH!!!
I hope the people who are insured through the Affordable Health Care Act (I refuse to us “Obamacare”) get better attention then someone on social security. When I had private insurance it was different, but it may be for other reasons too (the ill treatment).
No wonder I’ve been out of my mind anxious. I have to remember to stay in the moment and get “out of my head” which can be challenging. But when you listen to your heart and stay in the present, the cloud vanishes. The trick is hanging onto it which is almost impossible to do without years of training. Although I don’t have formal training, I certainly have life circumstance training.
My healer turned me on to this product called “Deep Blue Rub” It comes in a few forms, but the rub is what I use. It’s not cheap, but a little bit goes a long way. I rub it on my legs and feet and it actually helps with the pain. I trust her completely; you can only get it through this company called “doTerra” It’s doterra.com. They have all sorts of essential oils which she uses on me during treatment. I ordered one of those as well. Becoming a member gives you a better price.
Posted by Sherri at 8:17 AM