Saturday, January 14, 2017
So, well, the rheumatology visit did not go they way I thought it would. No need to worry about rheumatoid arthritis, as was the thought. No, well, I tested positive for Sjogren's Syndrome. I have been actively trying to avoid thinking about it.
My GP differs with the rheumatologist in that she thinks I've been having a flare and is the reason for so much elevated pain. Frankly, I agree with my GP. But whilst she thinks that, she is not going to treat me with the super drugs at the moment. Since I am not really wanting to take anything like that, I am okay with it.
A couple of weeks ago, we had a front come through that made it feel as if I hadn't been taking Celebrex for eons. I didn't know arthritis could be that bad and by the time I saw the rheumatologist, I was pretty miserable. She wanted me to see a pain specialist. My GP also wanted that. But I cannot afford it, so I guess I could say that it was okay that the only female pain management specialist will not take me on as a patient since I have dysautonomia. The I-can't-afford-it-part-of-me was relieved. The I-can't-believe-how-much-I-hurt part of me was devastated at the news. I wept and wept and wept.
Later, I did some reading on lower back pain, where my arthritis is worst, and was convicted on how I should be stretching. I knew that, but I did not know that stretching my hamstrings, specifically, would help. So, I am trying to do so. But stretching hurts worse than the arthritis.
For many years, I have gone through this cycle: become convicted about stretching, try to stretch, stretch in tiny, tiny increments, become consumed by the pain, and stop trying to stretch. Months pass by and then I start trying to stretch all over again. Then I quit, a whimpering baby.
Today, I bent over too much and have been regretting every moment since. I recognize this pain and think it will eventually go away. But it is discouraging.
What I have been trying to do is stretch my hamstrings every time I take Amos outside to tend to his business, using the back steps. I whimper and whine and shout colorful metaphors and am deeply, deeply thankful when Amos tends his business rather quickly. No lallygagging allowed when I'm torturing myself!
The other thing I have been doing is high, high, high heat. I have been sleeping and sitting against a heating pad. My right hip, which had never bothered me this badly, has been just awful, so part of the time I have the heating pad draped across it as I lie on my left side and then use a weighted blanket to hold the heating pad in place as I sleep. The heat has been my most bestest of friends. And I am, most thankfully, better than I was a couple of weeks ago.
Of course, the other help I've had is that I agreed to start back on increasing the gabapentin. I am now 30 pounds heavier since starting that medication and I am really worried what increasing the dose might do weight wise, but I swear that the neuropathic pain is already slightly better after just four days. I went from 600 mg to 900 mg. She'd like me at least to 1,200 mg, where I abandoned the help in the hopes that if I lowered back down or got off of it I would lose the weight. All I did was stop gaining for a short while. SIGH.
One of the things I have struggled with the most is just how much pain I've had in my hands. I am used to them bothering me. I am not used to them crippling me. And, as far as the x-rays showed, the pain in my hands is all neuropathic. Most likely due to the Sjogren's.
So, here's the concerning part: about the same time I started having trouble swallowing, I also started having trouble becoming horse. If I talk for a long while, the hoarseness becomes a problem. Eventually, it is really difficult to do so. I have a terribly dry mouth, so much so that even drinking water does not help. And I get these dry spells in my throat that set me to coughing. It is as if, all of a sudden, someone has wiped dry the back of my throat. Often, the coughing tips over into an asthma attack. SIGH. In any case, the dryness is most likely the Sjogren's, or so my GP believes. The hoarseness, too. Maybe.
But then there is the inflammation in my thyroid, the nodules in my thyroid, and the pain in my neck. The problem swallowing could be because of my thyroid. Or the Sjogren's. Or dysautonomia. Or.....
There are so many troubling things and, frankly, I am not up for any of this. I have been in such a messy place all fall. Ever since hearing there was no help for the swallowing problem, that it was a new normal for me, I have feel defeated medically. Basically, being overwhelmed with the whole chronic and incurable part of my life. How do I deal with that??
Add chronic pain to my already overfilled plate and ... well ... I suddenly understand why the folk with dysautonomia whose blogs I liked dropped off. Why they disappeared. It's hard to write when your brain is so foggy that you are confused much of the time. It's disheartening to write when writing has become so difficult when it used to be as easy as breathing. It's depressing to write when what you have to say—aside from new recipes—is about suffering ... and you are massively failing at being a suffering saint. SIGH.
Of course, it is also difficult to write when you are spending much of your mental energy not thinking about Sjogren's and what that might mean for you. Not thinking. Enduring. Holding my Fluffernutter. And making tasty food like a roasted turkey avocado melt on sun-dried tomato basil bread.
Wednesday, January 04, 2017
To be blunt, I have been awash in pain. I do find it a bit odd that my best days, physically, in the past few months were when my parents were here for their visit. Of course, I cooked and cleaned and laundered myself from deep fatigue into total exhaustion, but this is more.
We just had some sort of front blow through here that absolutely felled me. There was a front last week I found difficult to endure, but this one was 1,000 times worse. Since October, I have had days where it felt as if I am not taking my Celebrex. I check and double check to make sure that I remembered to fill the daily medication boxes with it. I see that little yellow and white pill and think, Why do I hurt so badly? I have wondered oft and on how it could be that my arthritis could be so much worse. I am still conflicted about that. Is it worse, or is it just the dysautonomia magnifcation factor? You know, like I have such an exaggerated response when my blood sugar starts to drop rather than when it gets to a "normal" low level.
My hands are my nemesis, feeling swollen even though they do no look swollen to me at all. Stiff and sore and difficult to bend. My lower back is my arch enemy, the first spot of arthritis and my worst site. My right hip hates me. My knees mock me.
With the abdominal pain, I am felled by overwhelming waves of it and, eventually, it goes away. By that I mean, even if I have it daily (wee hours of the morning-ly), I still have big swaths of the day that are not filled with writhing in my midsection. And when I have a migraine, even though I doubt being able to survive it, it does end. The pain ends. Nausea is not pain, but even in the throes of it, struggling to get to the next second, some part of me knows that it will end. The bout will be over. I will be nausea free again, if only for a few hours.
The nerve pain is a different penny. It oft lasts days on end. So, for example, I've had my internal electric cattle prod poking my right thigh for the past few days. Fun times. I have been battling nerve pain every day, but in spates ... or at least in ways I can endure it, though, I think, perhaps, if you asked Becky, she would tell you that I have become more and more and more grumpy and quick to have my feelings hurt. Poor Becky.
But, oh my, I have struggled mightily with the stiff, sore, achey bits of me. The never-ending stiff, sore, achey bits of me. If you look up the word "achey," you will see it means continuous dull pain. UGH. Its that continuous part that gets me. It does get worse and then less worse, but the pain never goes away. I am sued to being stiff, sore, and achey when I've sat for too long or getting out of bed in the morning, but this is brutal.
I am awash in pain.
And losing perspective.
Tomorrow, I see the rheumatologist. I honestly do not have much hope for pain relief, given the medication options I know about, but maybe ... just maybe ... there is a way. SIGH.
Wednesday, December 28, 2016
"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have obtained our introduction by faith into this grace in which we stand; and we exult in hope of the glory of God. And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us."
I feel like I'm being buried.
Worried about Friday's testing.
And next week's new specialist appointment.
But let's think about food!
I AM A SOUFFLÉMAKER! Specifically, I learned to make a Spinach and Gruyere Soufflé. soufflémaker! Pretty fancy, eh?
First, the right dish makes all the difference. When I first tried this recipe, I used a two-quart dish, not catching my error. My soufflé, whilst edible, was a mighty flop. This one is a resounding success! I will admit, though, that I need to thank YouTube and "The Great British Bake-Off" and my step-father for getting me here.
YouTube taught me the folding egg whites technique. Whether batter or a soufflé base, for best success, mix in one third of the egg whites first, to lighten up the batter/base. Then mix in the rest of them.
To mix, YouTube also taught me that the best method is to turn your spatula on its side and use it to cut down into the mixture as with a knife. Next, twist the spatula so that you can scoop up some mixture. And then fold it over. Rotate the bowl a quarter turn and cut, lift, and fold. Repeat those steps until you have just mixed in your egg whites.
"The Great British Bake-Off" taught me never to grease your dish or else your soufflé will be unable to climb the dish. It also taught me to make a support structure for the risen soufflé so that it will hold its shape in the oven as it is finishing. Use parchment paper, cooking twine, and a small metal paperclip.
Gosh, days later I am still so giddy when I think about becoming a soufflémaker.
But the soufflé brings something to mind that probably will not make sense to anyone but me. You see, I very much dislike when someone tells me that I am a gourmet cook. I know it is meant as a compliment, but it is not a true statement. I am still only at the beginning of my cooking journey.
A gourmet cook has great skill, technique, and knowledge and blends those together to make culinary art. I have some skill and some technique and some knowledge, but I am no artist. I doubt I will ever be. However, I am well on my way to becoming a good cook (if ever I come to understand dough).
To me, what is significant is that I am learning this despite a significant cognitive deficit. I cannot just follow a recipe cold. I have to read it again and again until I think I understand it, and then I have to start studying it. I search out comparable recipes and study their differences. I read through the comments to see the failings of a recipe or technique or combination. I try to find someone online making the recipe (or one similar or with a similar technique). And I rehearse in my mind how to make the recipe. Only then do I try.
And when cooking, these days, I make so many mistakes trying to follow directions that I use a bazillion prep bowls to get as much of my ingredients ready so I am not having to concentrate on cooking and following directions and measuring all at the same time.
For me, that quiche was as much a triumph as a soufflé, because I had to learn pie crust in order to make it. That was a month's long venture as I tried to find the best recipe for me to start with and to learn and rehearse the process. Quiche might be simple for you, but, to me, it was as hard as a soufflé.
So, when you tell me, in all kindness, that I am a gourmet cook, I think, "No, I'm not! Oh how I wish you would see me, see who and what I am." I am a cook who's learned the fancy part of chopsticks, but I am not yet a pianist, an artist on the keys. But I have learned that fancy part whilst partially blinded and deaf.
[Can one have figurative language in a metaphor?]
Posted by Myrtle at 5:12 PM
Tuesday, December 27, 2016
I was so exhausted cooking, cleaning, and doing laundry during my parents' visit, that I did not capture a single day. I was also exhausted by the medical news. SIGH.
The blood work had came back with much of it positive, so my doctor added on tests to the blood that was drawn. Some of it is really, really high, so she is rather insistent about seeing the rheumatologist. She said she could not make a diagnosis, but her nurse told me that she was thinking more about rheumatoid arthritis rather than lupus. Another chronic disease.
The CAT scan was normal thankfully, however the thyroid ultrasound showed inflammation and also nodules on the right side. I am to wait six month, have another ultrasound, and do a biopsy at that time if the inflammation and nodules remain. I am not really all that big on waiting. I stink at waiting.
The phone calls for the thyroid scan and the blood work results felled me.
Since my mother came, but was essentially an invalid, my plan went from only cooking half the time to cooking all but one meal. I am pretty proud of the meal plan that I worked out, trying to balance new recipes for me to try with easy meals where the labor would be lighter.
This Bacon, Gruyere, & Butternut Squash Frittata was pretty darned great.
But compared to this Goat Cheese, Spinach, & Sun-dried Tomato Quiche ... well, I have yet to recover from both learning to make pie crust AND making the WORLD'S GREATEST QUICHE.
I learned three other tasty dishes, but I have yet to add them to my recipe rememberer blog. I am that tired.
Today, I had to fetch some things. Tomorrow, I have a delivery and a re-clean of my bedroom, Thursday, I have the electrician coming. And Friday I have the blood flow testing. Somewhere along in there I need to get groceries ... the things that ran out during the visit. So, Saturday is when I can start resting.
I cannot wait for Saturday.
Posted by Myrtle at 11:36 PM
Tuesday, December 20, 2016
This day did not start well. I sat up in bed and fainted. I stood up and fainted. I walked a few steps and fainted. Then I had a proper hissy fit about my body both on Facebook and in my room, hollering at the top of my lungs that this was not the day for misery and weakness.
With my parents' visit up in the air after Mother's surgery just last week and with my upsettedness over all the medical disappointing news, I just didn't not finish preparing for their arrival this evening. I had much to do before my trek to the airport.
I took out the trash, trimmed, divided up the chicken, and put the smaller bags in the freezer, poached the thawed chicken, put away the ginormous container of toilet paper and tissues I bought at the store, cleaned out the fireplace and laid a fresh fire, made flour tortilla dough, and made mango salsa. I feel like I am forgetting something now just as earlier I knew I was forgetting something.
For dinner, I made quacomole, mango salsa, and spicy Dr Pepper pulled pork tacos. I am allergic to mangos, so I couldn't taste test the recipe, but I like and respect Pati Jinich's recipes so I was hoping it would turn out well. It did!
I didn't have a recipe photo to go by and have not seen the episode with this recipe, so I did wonder if maybe I should have diced the mango smaller than I did. And maybe cut up the slivers of onions more. I will note that I swapped a poblano pepper for the recipe's call for a jalapeño.
I made my very first ever pie crust dough. I have been really, really, really stressing over this, a needful component to make my very first ever quiche. I used America's Test Kitchen's Perfect Pie Crust recipe.
On the morrow, I make my first quiche.
Cross your fingers for me, please!
I would like to note that this weekend I finished the small weighted blanket for Amos' vet tech. I am still super excited that I could do something to help someone else. Her doctor is rather excited about the possible help it might be for her anxiety.
I went to Walmart and photographed all the Waverly fabric options (the type of fabric I've been using). She looked through the photos and chose this design. I love being able to easily create personal weighted blankets. The vet tech is paying for the supplies. The sewing was my thank you to her.
Well, from the rather terrible beginning, through all those tasks, then cooking dinner, then making pie crust, this has been an incredibly long day. In between all that was another visit from the social worker from Parkview's community health program. I just blurted out all my upsettedness over the medical stuff, despite it being my first meeting with the nurse who is taking over from the one who left. A total stranger sitting next to the social worker and I just ... bewailed my misery. SIGH.
Yes, it was a long, long, long day for me.
Thursday, December 15, 2016
Today was frustrating.
When I dragged myself over to the lab adjacent to my GP's office, I spent over a hour waiting on them to track down the orders. They could have walked just a few feet to get them, but kept first insisting that there weren't any, then insisting that I had already had the lupus panel. I think I would remember if I had already gone for the blood work! Finally, they found the paperwork.
But, after the draw, they could not print out the barcode with the test order, my name, and birthdate. I was not interested in a handwritten piece of tape on my vial of blood. I wanted all that safeguard technology! Insisting on waiting until the label was properly applied very much annoyed the staff. SIGH.
I am absolutely exhausted and want nothing more than to sleep until Monday, when the social worker is coming to visit me again. Only on the morrow is the thyroid ultrasound and the head CT. I have to be there at 2:00, so leave at 1:30. Get ready at 1:00. Wake at 12:45. Totally not enough sleeping time between now and then ... if you allow for bouts of writhing and/or violent waves of nausea. One more day to get through exams/blood work/tests/scans. One more day until I can languish on the sofas with Amos and focus on resting.
Sadly, two more toes are now red and swollen and burning. My poor right foot. Walking is not my favorite activity at the moment. It is hard not to continue to be overwhelmed, especially when the chilblains have gotten worse. I am fervently hoping that since my right foot is always more blue, that the left foot will be spared.
One helpful note of today was that my GP's nurse let me know the blood work would be longer this go round and not to expect results until next week sometime. I was grateful for that message.
The best part of the day was visiting with Becky via phone. Such mercy.
Posted by Myrtle at 11:24 PM
Wednesday, December 14, 2016
Yesterday's doctor visit was discouraging to me. There were two main health problems of focus, the blinding attacks of pain in my tongue and the burning pain in two of my toes. I have a tentative answer for both and both answers are chronic problems instead of something discrete that could get better. However, both also have a that. It could be this or it could be that.
For the first, my doctor believes that it is what I suspected: trigeminal neurologia pain. It is common in Multiple Sclerosis. One treatment of the chronic pain is botox, which initially was not on my list of things to do ever, but now I think that I would do most anything to keep from having another attack ... even having needles stuck in the side of my head and face.
If I could afford it, that is.
What I have struggled with as much as the attacks and the fear of another one is the idea that I have a new MS symptom. For years now, my MS has been more bothersome than anything else. After all, I am rather good at enduring ... or maybe I should say ignoring.
The other diagnosis I received was chilblains. It is a bit staggering to me that I have damaged skin not from exposure but from the fact that my own skin is as cold as if it had been exposed to the elements. Chilblains will not heal—a bit of a lengthy process—until my feet stay warm. Hearing that was utterly disheartening. That won't be until summer. SIGH.
But when my GP started looking at my foot, she was a bit more concerned about how blue it was than the reddened, swollen toes. She asked me to take off my other sock and boot and then spent a long time focusing on how my right foot is more blue. It always is. She questioned me about how I was diagnosed with Reynaud's and what testing I had. None was not an answer that set well with her. She doesn't want to repeat things unnecessarily, however she doesn't want to just assume something is dysautonomia even if dysautonomia is the most likely answer. So, I have blood flow testing on the 30th.
Hearing about two more chronic conditions ... two more new normals ... just felled me. But there was more. With the symptoms I've been having, my GP wanted to test me for lupus. Lupus. SIGH.
I was so very, very, very certain that the blood work would come back normal. It didn't. More blood work tomorrow. Lots of calls and work to get me into see a rheumatologist as soon as possible netted me an appointment January 5th. It is an out-of-network doctor, so I am not sure I could afford to see her long term, but she is also female. The only in-work doctors are all male and are all booked up until April. I cannot even sort out how I feel about that.
The that of the trigeminal attacks is a growth on the trigeminal nerve, so I have CAT scan on Friday. She wanted an MRI, but she thought I couldn't have one. I think I can, of a sort, but I would have to read more about my pacemaker. I am unsure if it would be worth it at the moment, if that makes any sense.
Today's appointment left me with a second appointment on Friday: an ultrasound of my thyroid. Today's specialist is not really concerned, but wants to be safe. My GP? Her nurse has sent me three messages about not leaving things for a while because my GP is worried. Her desire is for me to have the best life I can, living with dysautonomia. Touching.
I am overwhelmed.
I am overwhelmed.
I am overwhelmed.
Today marks 350 days since I last cut. A few weeks ago, I was totally overwhelmed and wanted to cut for the first time since I walked away from that coping mechanism. It occurred to me then that I had given up my BIG GUN coping mechanism without acquiring another. I honestly didn't think then that the need would arise again so quickly and in such a dire way.
After my appointment, the specialist's nurse asked me how I was and I blurted out about missing my BIG GUN. In a weird and human response, she blurted out that drinking was her BIG GUN and she was working late because she was avoiding going home, afraid she would drink. The look on her face felt like what I knew the look on mine was, so I asked her if she wanted to hear the Word of God. She did. I read her Psalm 51, 77, and 139. She wept and thanked me and said that I was the mercy of God. All I could think is: Where's my mercy? Pitiful, I know.
I need a BIG GUN. I need one for the This or Thats of my life at the moment. All the ways I have for managing my anxiety are insufficient when I am totally and utterly overwhelmed. They are good things in my life. But they are bandaids. I need the ace bandage wrap at least.