California diary, day 95: After 91 days, one unnecessary trip to the clinic and several phone calls, I FINALLY got to meet my new primary care nurse. I was originally scheduled to be seen on the day after Christmas. Which was cancelled without telling me, so I showed up for the appointment and had to turn around and go home. Next attempted date of take-off? January 22, the earliest window with a flight path for me. Also cancelled. Third time’s a charm, so they say and February 4th was mine.
So as a literary device and to get everyone updated on what happened while I was waiting, let’s step back into time and talk about January, since I’ve already told you about December. (More Adventures and Updates from CA)
Beloved and I had a quiet dinner at the local Indian restaurant for New Year’s Eve. Great food and then back home, when the ball dropped in our time zone, we had bubbly drinks, kissed and welcomed in 2014. A week later, our friends from VA arrived after their cross-country trek and now we’re all living together.
Oh stop thinking those naughty thoughts! It was always our intention to share living space with each other. Like trouble, bills shared are bills halved. When the original plan was formulated, we had no idea that the two of us, the path blazers and first away team (no red shirts, thank gods) would have to choose a place that is at best suited for two rather than four. So it’s been an interesting month, getting the four of us settled into limited space within the odd layout of the apartment. Compromise and a certain Japanese ability to politely ignore the genuine lack of real privacy are both being used as well as tested and adjusted to being used again.
Yes, it’s cramped and we sort of have to step over each other. We go though their room to get to the kitchen; they come through ours to get to the bathroom. Hmm bathroom; yeah, one toilet and one shower means a certain amount of planning for health and hygiene. Ear plugs are de rigeur as we each have our own technology–and preferred websites. With the minimalist approach to kitchen items, a favorite dish or cup is often…in use by someone else.
On the other hand, there are extra hands to help with the things we either cannot do or have to plan carefully to do, like trash removal and washing the dishes. Meals at home are much easier and more usual with help in the preparing and cooking of same. Grocery shopping is shared, which also alleviates some of the anxiety for me, particularly when I’m having a bad day.
It’s also nice to have a concrete reason (so to speak) to at least make the effort to be more social, to make the efforts of conversation and discussion with someone besides each other. It’s also been a benefit to them as they arrived without employment–and you cannot count on getting your dream job the first place you apply for. (Or even the 10th, 27th or 136th.) They have had the benefit of a place to live and food to eat without having to go into panic mode about the basic human needs. (They also arrived with a good cushion of savings, the result of working 70 or so hours per week for the prior 3-4 months.)
So let’s segue into my doctor’s appointment. Remember that my first VA PCP had removed me (cold turkey) from Vicodin last May? And I have had to fight, scream and threaten (almost) to get anything resembling a regular amount of it since then? And when I got here, I needed to have an appointment within about 4-6 weeks in order to have all medications as prescribed, without running out of them? So it’s not a shock to anyone when I say that of course I ran out of medications?
Ergo, my condition as of 10 am yesterday morning was something along these lines: no Vicodin for most of January; no Gabapentin (Neurontin) for about 2 weeks. That means no prescription pain medications for long enough to make me bitchy. (Sorry, housemates and my mate.) Instead, I was taking 4 Alleve per day. And every medical person (or medically informed person) reading this just flinched. Naproxen sodium is hell on your stomach and most doctors prefer that you do NOT use it as a maintenance drug. I know this, but figure 4 of them is better than 12 to 16 Tylenol in the same time period. (Which frankly does not stop my pain. And I am allergic to ibuprofen (Advil) or I’d have to take about 6-8 of those.)
Therefore, I was unmedicated for pain. In plain words, I hurt like hell, with knives being stabbed into my back (the arthritis) and general body aches and tender pressure points (all of them for the fibro test) hurting and making themselves heard. I was anxious and stressed because I figured I had a battle on my hands to get back the pain meds I had used (been using for over 2 years) that worked. (“Worked” being the most important word here; I tried Celebrex, a fairly hardcore pain med which did very little for me. I’ve done all the OTC stuff and have had codeine, no effect and Darvocet, no longer made nor distributed. Limits my choices.)
As with the psychiatrist and social worker, my healthcare provider is called by her first name. I would suggest that everyone go to that method of interaction…because it puts the patient on a more equal level with the care provider. Having to call the physician “Dr. Jekell” while s/he calls you “Fred” imposes a hierarchy of perceived authority and imbues the doctor with a certain godlike power. And besides, my name’s not Fred.
It’s my body, it’s my life. I will have at the VERY least a 50% say in what happens to both. I view my healthcare providers for both my mental health and my physical health as working FOR me, and WITH me, to assure the very best, most appropriate plan of pain management, symptom alleviation or cure and general overall well being for ME. This means that I have the final say in what I will (or will NOT) take from the great wide world of pharmacopoeia and what course of treatment or therapy I can and will follow. I listen to the expert’s advice; I have the good fortune of having been in healthcare, so I have some experience in the field of my own to use as part of the information of my decision-making. I do my own research about the healthcare I receive, to include the medications I am on. And I don’t just look at one website to dismiss or verify it; it may be a shock to some of you, but not everything on the Interwebs is true or real.
Now back to the original story: it’s 10 am (yesterday) and I’m sitting in the Eureka VA clinic. Alone because Beloved had his own doctor appointment at the same time. Stressed and anxious because I’m alone and having to do this without an extra set of ears and eyes to help me; stressed and anxious because I fear having to battle for my own health and well being–and it’s really important to me to have a life as free from pain as I possibly can, within the limits of modern drugs. (Herbal, natural and “old time” remedies are still possible for me but as a part of the Federal Government, the Veterans Administration cannot give me some leaves to chew on and a chunk of medicinal incense to burn. Or even more plainly than that: if marijuana would replace every single one of the pills I’m on, I would consume only that–but I will not get it from the VA until such time as pot is legalized at a national level.)
To my credit (and my new anti-anxiety med), I am NOT talking like Russell Brand. And once my appointment started, things went…amazingly well. The nurse did took my vitals, started my (new and local) medical file. A little more waiting, and then the nurse (I think she’s actually a nurse practitioner) came herself to escort me back to the treatment room. She and I had a genuine conversation (we both got to speak!) about my medications. She had already pulled up my records and taken some notes about what pills I was on. (Unlike Beloved’s new doctor, who was handed HIS information in hard copy; Beloved is OCD and has enough medical stuff–history, med list, etc–that he writes it all down and gives it to EVERY health care provider he sees. She didn’t even look at it but then she wanted him to answer questions that would have been completely covered by 5 minutes of reading those papers. We are probably NOT staying with her once we can find someone else, hopefully recommended by a real person who loves their doctor and is willing to share.)
After my PCP and I talked about medications, I also told her about my other concerns, such as an eye exam and that desired mobility scooter. We discussed everything and then, as the end to my appointment, she did the “doctor” thing of listening to my heart and lungs and looking into my ears and eyes. You know, the basic check up stuff. And I walked out of her treatment room…with stress and anxiety left behind.
Here’s why: nurse or not, she can (and did) write new scrips for every one of my medications. Including the pain meds. She also gave me immediate supplies of those pain meds to hold me until all the drugs can be sent from the central dispensary in San Francisco–takes it about a week to get to me. The VA clinic here has a small pharmacy, with a limited inventory but they had the Gabapentin. They do NOT carry and cannot give out Vicodin. However, she wrote a scrip that the VA clinic pharmacy faxed across the street to the CVS where I went to pick it up (at no cost, of course).
We had agreed on the amount of Vicodin I would be given–which is 2 per day, with a bit of spare added in as an emergency 3rd pill on those days when the pain is that terrible and that prolonged that 2 just don’t cut it. No fuss, no argument from her, no “I am not comfortable giving you that” like I had gotten from the VA doctor in VA.
Relief, blessed and prayed for relief of my pain. Lack of anxiety because I can request refills or modifications to those pain pills as I need or want them. Pretty much an immediate mood changer, to know that if I hurt, I have medication that works and I can take to stop the hurting. (Or to be honest, stop it as much as it is ever stopped. There is still a certain level of ache and pain, always has been. No idea if pot, massage therapy, acupuncture or any other alternative therapy will truly and completely remove all the pain. Not sure I’d know what to do with myself if it did.)
But wait, there’s more!
I had to see the clinic vampires…4 vials of blood and a pee in the cup to check pretty much everything of basic functioning, as well as test the thyroid (an all too common problem in women) and take a look at my blood sugar levels (and make sure that I’m not peeing out protein, a bad thing).
I have been given referrals for:
1. Having my eyes checked for the first time in 2 years. My new anti-anxiety med also causes blurry vision, so I spend most of my life with everything in a soft focus anyway. Will probably end up with new glasses.
2. Meeting with the pain management team to assess my pain and come up with my own, personalized pain management course of action. We’ll start this as a video conference; if that doesn’t get the results we want, I’ll end up having to go down to Frisco to the central VA facility there.
3. Getting new parts for my CPAP machine. Another video conference, this time with the “Chest” team, who apparently handles things related to breathing. I hopefully will not need a new sleep study or it’s down to Frisco for that as well.
4. A mobility scooter. At least, she’s requesting it for me. I will find out if it’s been approved…whenever they call me and tell me to come pick it up, or give me a voucher and I go pick it out at the local medical supply store. However it works, so long as it works. I’ll figure out how to get it in and out of the back of the van. (And probably ask if the VA helps to pay for any modification to our vehicle required to make that possible. Thank the gods we have this van, the perfect car for us that we didn’t know to specifically ask for.)
5. A new medication for my GERD. I have been taking ranitidine, which just doesn’t deal with all of my stomach issues adequately. I am back on the med I took when I was first diagnosed with reflux, that little purple pill Prilosec. Except that my bottle says “omeprazole” and the pills are pink and white.
Can you imagine how light I felt, leaving there yesterday? Can you imagine how happy I feel today, having had my Vicodin and knowing that if I still hurt or the pain increases again, I can take another one and not have to meter them out because I’ll run out before I can get more? That small, simple white capsule allows me to let go of the myopic view of life, focused through a lens of pain. It allows me to refocus on other things. And I’m sitting here, thinking about all the things I want to do now. And if I’m not careful, I’ll end up hurting worse by doing too much all at once. Sigh.
Hope and fear are so very closely related…one leads to a positive ending and the other a negative, but the general feeling is about the same until the results are known. I was so afraid that I had to continue what had been an uphill, unwin-able battle to deal with my fibro and all of its attendant issues. I was terrified that I would have to continue living in nearly unbearable pain, which has makes it very hard to have anything resembling a “normal” life–including personal hygiene and activities of daily living. It was nigh unto impossible to feel hopeful, with the expectation of a good outcome given the prior experiences I have had with the VA health system.
All I can tell you is that while they may all be under that vast umbrella called the VA, the two clinics could not be more disparate. And I absolutely prefer this one; ALL of the staff is genuinely kind, pleasant and trying to do all within their power to help. They seem to view their jobs as happy and willing service to the veterans in this community and NOT as metering out a few paltry pills from their WWII stock to the “takers” who are trying to get all they can from the teat of “Uncle Sugar” (like they did in VA; this attitude difference occurs in almost everything *here* versus almost everything *there*, not just at the VA). They work for and with the veterans to ensure the best possible care for each patient, to help the vet have the best quality of life within the limits of their health issues, both mental and physical.
And I have never been more glad that this (unexpected) benefit of my time in the Air Force was worth the effort of applying for it and continuing to use it. Without it, I would have had no pain medications for almost a year now. None at all. Zip, nil, naught, zero. They have given me all the medications I need; I have a new blood pressure cuff (to replace one in a box somewhere in the storage locker or the in-laws house in VA). If my blood test does turn up diabetes, they will give me all the paraphernalia for that. They will provide me with a scooter if I qualify–and I both understand and approve of a qualification requirement, as there is only just so much money in this pot and it should be used according to need. While mine is great to me, how much greater is the need of a soldier returning from war without legs? If there’s only enough money for one scooter, give it to the soldier. I realize that this is a little simplistic, but you get what I’m trying to say?
Instead of having limitations set by pain and the fear of more pain after exertion, I can focus on doing the things I want and need to do. I will try to pace myself so that I don’t end up in more pain through my stubbornness or asserted ignorance of the effort required. I may very well end up making a list of all that I want to do and then categorizing and prioritizing it by what can be done now, with the small energy I have–and what will have to wait until later, when I have more days in a row without that insistent, all-consuming pain, riding on my back like a leech and blocking any chance of doing something without it hurting.
What will I do? I want to clean up our room. Like, move things around, sweeping the floor and then mopping it. I want to rearrange my desk and the Pelican cases I use as a dresser. I want to stand and cook an entire fabulous meal without having to stop in the middle–or hand off to my sous chef to complete. I want to explore the local thrift stores, which requires walking and lots of it. (Or a scooter, carefully driven through the aisles.) I want to go to the beach and look for stones and shells. (Probably NOT on a scooter, so this one requires some time to work back up to being able to walk longer than 5-10 minutes and especially on a surface that is not stable nor firm.) I want to be able to go to HUUF every week because the prior days have not sapped all energy and ability to get around out of me.
Nothing particularly earth-shattering or even particularly requiring of tremendous effort. Just the small moments of life that we each live, but having them without the terrible pressure of untreated pain. And for the first time in almost a year, I feel…hopeful. I have more faith in a positive outcome because I finally have healthcare providers that are providing my health CARE. I did not move to CA to spend all my life inside the four walls of my home. We did a great deal of that in VA and the desire to get out, to be outside, to be out among other people, was a prime consideration in the decision to move.
Now I have the ability to make that decision real. And Beloved’s doctor’s appointment went just as swimmingly as mine. His was for the psychologist and was very rewarding for him. There will be support group meetings as well as individual counseling; they will help him find more coping mechanisms, as well as alternate behaviors for handling the effects of his mental disease. The doctor gave him a more precise, more detailed label for his disability–and the better you can define something, the greater the chance you have of finding how to accommodate the reality of that disability.
Accommodate the reality of the disability. That’s the only way, really, to live a life that has limitations beyond the norm. I’ll go out on a limb here and say that, truly and universally, we ALL need to live in a way that accommodates the reality (the REAL reality) of our lives, whether we have a disability or not. How many people you know are unhappy or angry because their lives are one reality, but their minds (and emotions) insist upon another?
Beloved and I are slowly, with the help of other generous, knowledgeable and caring people, gathering up the tools to accommodate our reality. And we shall eventually, perhaps sooner than I can imagine, have a life that is peaceful, balanced and (dare I say it?) normal. HA–I don’t want to be normal. But I would like a life that allows me to do the things I want to do, the things I need to do, without using superhuman effort–and failing–to ignore the reality of my disability unaided.
There is a life outside of fibromyalgia’s limits. There is a life beyond having BiPolar type I, Category B with OCD–and stress anxiety disorders for both of us. What does this life have? Anything I want, as long as I remember, understand and accept the limitations of my own health, our own health.
Can I order my wet suit and board now?