Zydrunas photo courtesy Sam Donnelly |
Hello from The Other Side. I still don't have a Full Tank, so to speak, so I can't stay long, but I wanted to let you know how I was doing and to thank a couple of people.
Firstly, I am feeling a great deal better. The pain is almost entirely gone. Certainly the jolts of pain have been eliminated altogether, and the deep aching in my arms and lower back has been reduced to a once-in-a-while twinge. I still have to use the gel insoles in my shoes for heel pain every now and then, but not nearly as regularly as I did even a month ago. It is very encouraging and wonderful progress.
What I am left with now is a sad lack of strength and stamina. My arms, especially, are astonishingly weak. Even now, after typing only this much, they feel heavy and shaky. Driving more than twenty minutes or so is very uncomfortable and, at times, impossible. My kitchen cupboards have been reconfigured to put heavier items on lower shelves to minimize problems and with an eye to my safety. I continue to try and take short walks, but my stamina is always a variable. I worry about being able to make it back home. The biggest struggle I have right now--besides Patience--is knowing that Fine Line between Building Stamina and Overdoing It.
I have been stacking up more and more Good Days--days when I feel more like Myself. Days when I can think quickly, speak confidently, intelligently, and fluently, and whip through a crossword puzzle in no time flat. I even picked up a little freelance editing work, made almost impossible by the vinyl siding crew working next door (playing thrash metal music at top volume, naturally).
I am tired, however, still very tired much of the time. Large groups of people wear me out; activity, whether I am involved or merely watching it, wears me out. I think the act of Trying To Keep Up With Anything is tiring to me. But I press on, always, for I am anxious to be Well.
No words can express my emotions for Jared's Mother's Day post, which was a complete surprise to me. I am always thankful for the human beings my sons have grown to be, and Jared's thoughtful essay affirmed that he is a caring and introspective adult. That he attributes some of his best traits to me makes me happier and prouder than he could know.
And I want to say a warm thank you to Jill and Wes Wanders, too, who have taken some time out of their busy, busy lives and emailed me expressing concern, inquiring about my progress, and/or informing me of this and that along the way.
Finally, I want to mention my mother, St. Patsy. She has, without fail, sent me an encouraging message--full of emojis--every single day from her trusty iPad. Knowing my general dislike of phone calls and how holding the phone can tire me, she cheerfully embraces this medium of communication despite being in her late 80s. And she has agreed to abide by my rule of limiting the pictures of great-grandchildren to one per day. (That was a tough one.)
Things are getting better, albeit more slowly than I would like. Compared to the Fear and Panic and Uncertainty I faced a few months ago, however, life is much better. In a week I will have more labwork done; at the end of the month, a followup appointment. And in July, we have plans to visit Niagara-on-the-Lake to replenish the cellar.
Lots to look forward to.
Cheers!
So good to read a post from you and to hear that progress is being made. It might be slow, but it appears that you are doing the right things and (slowly) building strength, etc. Patience is another issue completely - and I certainly can't help or offer any advice there as I have absolutely none! Thanks for letting us know how you are doing. Here's to good lab results and a good visit with the doctor.
ReplyDeleteVera--Thank you. Isn't Being Good the worst? I don't know how laid-back people manage to handle themselves. There are days when I want to throw dishes against the wall (if I had the strength). Patience--there should be a pill for it. ;-)
DeleteOh, Nance, I have been AWOL again and am just catching up! :-( I'm so, so very sorry that you've been struggling with new, serious health issues!! I am very relieved that you are improving though and even have a trip to N-o-t-L planned.
ReplyDeleteI know from my work with those with celiac and other AI conditions that Vitamin D deficiency is often a symptom of a bigger issue, even when one has a genetic predisposition to it. I, myself, will always have to take hefty doses of Vitamin D because I will never absorb it properly because of the damage done by celiac. (Most of us who were diagnosed as adults although we had symptoms for many years will never completely heal.) I hope your doctor tested you for celiac and other conditions that can be a cause of Vitamin D deficiencies (and other vitamin/mineral deficiencies).
Sending you major get well wishes and lots of love and hugs to get past all this! Sure wish I was closer, but I'm so glad you have others like St. Patsy looking out for you (had to chuckle on the limit on great-grandchildren photos). Last, Jared's piece was truly lovely and not at all surprising to your readers/friends.
Shirley
Shirley--Thank you for your kind concern. As I said in my original April post below, the doctor tested me for a ton of things and took a very extensive narrative during my three-hour consult. My followup next week will include labwork to retest Vitamin D and check on a couple other levels which were suspect. After those come back, we'll go from there, but she seemed to think they were largely unremarkable overall, given my history.
DeleteI meant to, of course, include the Long-Suffering Rick in my post. He has done yeoman's work in taking stellar care of me throughout all of this, and the care has been in every arena: physical, mental, emotional. I do not enjoy asking for or requiring help, but having him be The One makes it so much easier.
Thanks for posting this. I was wondering, but I try to not pry, allowing people to tell me things in their own good time. I can imagine how draining it is for you to feel like all of life is draining you, but with St. Patsy's daily doses of inspiration and your sensible attitude you sound like you are on the mend. Patience is a virtue, they say. Often I think that "they" are idiots, but in this case they know what they're talking about. Be a patient patient.
ReplyDeleteAlly Bean--Oh, I would never consider a kind email of concern to be prying. There are days on end when my only connection to the Outside world is the Interwebs. It's nice to feel remembered and still Part Of Things.
DeleteAnd patience is incredibly draining in its own way, let me tell you! I have cursed They/Them many times. Grrrr.
Updates are always welcome in the blog world when people have been on a break. Thanks!
ReplyDeleteJean R.--You're welcome. It has been an unwelcome break, to be sure.
DeleteOH my goodness, I must have missed something. So sorry to see you have been struggling with health issues but glad that you are making some progress, I loved your son's post. 💕💕💕
ReplyDeleteRose--No, you haven't missed a thing. You commented on the post previous to Jared's when I first explained my illness. You have had many things happening in your own life, to be sure. It is a busy time.
ReplyDeleteSO GLAD to hear that you are doing better. Light at the end of the tunnel and all that, even though I am sure that in your opinion, the light is still looking very small and very faint.
ReplyDeleteIt has been crazily busy here, what with a graduating 8th grader and going to all the meetings required by his new high school. And then I've got the daughter, who was on a medicine that was like magic for her ADHD, but wound up having the side effect of keeping her awake for four hours a night. So of course we had to stop. Did I mention she was sent to the principal's office? First grade, I think that is some kind of record. After that incident, I started the meds, but of course they wound up being for naught.
Nothing ever seems easy, and I am sure you are feeling the same way right now. It sucks. I hope that you are able to find some solace in finding some new wine!
Gina--Children never stop being a Mixed Blessing, as any parent can tell you. I love my boys like crazy, but there are still times when I want to give them a good hard smack. Then one of them does something meltingly wonderful, like Jared's Mother's Day post below, and I'm back in love with them.
DeleteYour daughter's situation is not so uncommon in education and medicine, which may or may not comfort you since it is happening to you and you have to live through it. I've heard her story many times from parents and teachers alike. I can sympathize most heartily on both sides and always, always with the child. It's such a frustration for everyone.
Now, as far as being sent to the office in first grade...psh. No record here, where some kids have been suspended from kindergarten. And not due to ADHD meds, either. Someday, when we meet in person--AND WE WILL--I'll regale you with Tales Of The City.
Thank you for your well wishes. No, this journey is not easy. My life is unrecognizable to me as it is, and I am trying not to be resentful of my limitations. I'm trying to remember that this isn't forever. It just seems like it!
Glad to read you're feeling better. Knowing when to stop to avoid overdoing can be a challenge. Then, there's that word "patience" -- often hard to practice. Sounds like you're on the best track for you now. Keep at it!
ReplyDeletejoared--And here I thought I was retired from working! Looks like I'm still working every day whether I like it or not, at Patience. Thanks for the encouragement.
DeleteI can tell you that in my experience, you do gradually learn what is Tired and what is Too Tired. But it's a process, and sometimes a frustrating one.
ReplyDeleteBut the fact that you wrote this post, and that you say you have more good days than bad is GOOD NEWS! It can seem to take forever, but slow and steady does actually win the race. I'm thrilled you are doing better, and hope that each day will feel a little more like "normal." Take care! xo
Bridget--Thank you so much for your kind encouragement, and for your experience. I think you're so right. Again, so much has to do with Patience! It's important for me to stop and RECOGNIZE the progress I am making, rather than to fret about what I Cannot Do. I have made lots and lots of small gains, and I know I will continue to do so. Thank you, and I will remind myself of Bridget's Law--Focus on the Good News.
DeleteNance,
ReplyDeleteIt is so good to hear from you. You have been on my mind but I did not want to bother you because I know healing can take a lot of energy. I can tell you that after I had cancer I suffered from extreme adrenal fatigue for several years. I was not in the pain you are in but really was beyond exhausted. I would feel like I had the flu for three or four days a month on top of the fatigue. I finally found a great doctor, took a ton of supplements and rested. It was hard when I started to feel better then had a bit of a relapse and I sort of wanted to lose hope. But gradually my mind cleared, my energy returned and I got back to my life just like you will. I am sending you the biggest hug for a full recovery. This will be something you can manage in the long run, now you just have to regain your strength and stamina.
All the best,
Meredith
Meredith--Yes, what you describe is similar to my experience: feeling really well, then having a relapse and being concerned that I've lost all the ground I've gained because I overdid it or perhaps didn't actually progress at all. I'm very grateful that I am not recovering from anything as life-threatening as cancer. Likewise, I am thankful, as I mentioned before, for finding my current doctor who was astute enough to pinpoint my problem and quickly act upon it. I shudder to think where I'd be also if my friend had not intervened and gotten me a spot at the Cleveland Clinic.
DeleteYour virtual hug and encouragement mean very much to me, as do the kind thoughtfulness and support of everyone. It helps not to feel so alone and isolated as I try to get back to my life, as you say, in the long run (a favourite pet phrase of my late father's).
Thank you so much for the update. I wish I could wave a wand to speed your recovery. I've continued to send prayers to whatever higher power there may be. In the words of the great Leo Tolstoy, "The strongest of all warriors are these two---Time and Patience." You have both.
ReplyDeleteNCmountainwoman--Have you checked on Amazon for that wand? ;-)
DeleteThank you for your well wishes and prayers; I will take them both. Time I have overmuch; Patience...well, I am developing it by necessity. Today has been a challenging one, and I am, as my father would say, using it to Build Character.
I'm glad you are on the road to recovery. It's difficult to go from being pretty darned healthy to having something that wipe you out so completely. In my case, I'm not sure I will ever be as energetic as I once was, though I do hold out some hope. I am so glad to know that you have wonderful support...Rick, St. Patsy, your sons, etc. You have always given all to your family, as I am sure they have always given all to you. Family and friends are a blessing in difficult times. Hang in there. And pace yourself.
ReplyDeleteJ@jj.com--You know well the challenges of being suddenly and inexplicably unwell. It's hard to find oneself in such a new and alien life, trying to navigate each day without sinking into frustration, anger, and hopelessness. And let's not talk about the Fear.
DeleteA support system is truly a godsend, but as you also well know, so much has to come from Within. It is exhausting. And there we are, right back at needing our friends and family again. Sigh.
Thank you for your support here and via email as well when I was trying to understand my earlier (mis)diagnosis of RA. I did not mean to exclude you from my thanks; I guess I was sort of stuck in the time frame of between the last time I posted and this. I do hope you know how very much I appreciated your kindness and the time you took to send me information and words of empathy and friendship. Please forgive what was a most unintentional oversight on my part.
Nance, I was SO not looking to see thanks here for the emails that I sent. If we get down to that level, thanking everyone who has reached out or answered a message, it would be a long list indeed. I am so relieved that you are not suffering from RA., and that the vitamin D is helping. On a personal note, I just hope I will decide to revive my poor blog. Notice the grammar there...I haven't even decided to do something...maybe I will soon. Time will tell.
DeleteJ--Oh, I know that. But it occurred to me as I was responding to you that you had provided so much support in the Earliest Days. Sigh. Those were tough times, indeed.
DeleteI hope you do continue to post over at your space. I check in pretty much daily, just in case you are inspired/have the time or energy. I know how it is: you miss it but it's demanding of so many reserves. I get it.
I'm glad to see you here (and at my Photo Journal Pretending to be a Blog). As you know, I'm having to exercise my own patience, and it is FOR THE BIRDS. Poor Mike - he spends half his time trying to do all the things, and the other half trying to make sure I don't damage myself further (for example, the time I thought it would be a good idea to come up our extra steep back steps with my walker). Apparently I'm exhausting. And it's embarrassing to be so needy.
ReplyDeleteBut we shall prevail! Maybe we'll be back to as close to normal as we can be at about the same time. Then watch out world!
Jared's post made me cry. You & Rick did a really good job with that boy child, that's for sure.
Bug--When did we get so Feeble? Like you, I am Over It. In so many ways, too. Instead of feeling flattered on a daily basis by How Much Of A Superwoman I Was (How on earth did I do so goddam much? Was all this stuff really that heavy? Holy crap, I was a marvel!), I mourn and mope about what a shriveled has-been I am. And about the sad state of my house and...well, you understand. The Control Freak Blues are gettin' me down.
DeleteBut, hey! I like your plan. We shall prevail and the world can try and see us through the cloud of our dust.
Thanks so much for the kudos re: Jared. He's aging like a fine, fine wine.