Hey guys! I’m back from my unintentional hiatus. As I have alluded previously, things around here have been crazy what with the kids moving to Ohio and me being sick and now the hubbs is dealing with some medical stuff.
He had allergy testing a couple weeks ago and lit up like a Christmas tree for a LOT of things. Mostly foods and environmental. Several trees and grasses (hay fever), the usual indoor culprits (dust thingies) and a whole list of the oddest foods. Strangely enough (or not!) most of the foods were things he had eaten recently. WEIRD!
So, we’ve gone off all these foods. I’m talking things like wheat (yeah, his celiac tests came back negative, but he’s allergic to wheat and I don’t quite understand that just yet), carrots, grapes, coconut, apples…WHA?? Yeah, weird. Oh, and turkey! Pecans, walnuts, sesame seeds… sweet potatoes, cauliflower, tomatoes!
Poor guy, he was pretty stunned and dazed. You’d think after living all these years with a type 1 diabetic, he’d be used to the concept of not being able to eat certain things, but nope. He seems so baffled. It’s all I can do not to say, “See? Welcome to my life!” heh! But no, I haven’t done that. But occasionally I REALLY want to!
On top of finding out about all the allergies, he then had to begin the prep for a double scope. From the top and the bottom. Yikes! So then he had to go off things like rice (which is what most ‘wheat free’ things are made of) and fresh fruit and veggies (seriously?) and nothing purple, red or blue… that was only for 5 days, thank God. Then on the last day, he had to do liquids only and take that nasty diarrhea stuff then drink like 40-some ounces of clear liquid immediately after. Egads!!
He did okay but it was a challenge figuring out what he could eat. During the 5 day thing, we were in Cincy with Corey and Melissa, so that actually helped since Corey has celiac disease and has learned what to avoid for that. We just basically put Tommy on a celiac diet with the added restrictions from his allergy test and/or his prep diet. My brain was fried after all that food juggling! And that’s not counting my own food restrictions like dairy and super-acidic foods that either give me horrible sinus issues or cause my tongue to swell and crack. (yes, crack…it’s so painful!) It’s a wonder we can find anything to eat between us! Ha ha ha!
So back to the scopes.. this was the same gastro doctor he went to for scopes before, so we were thrilled to get in with her. It was probably three years ago when he had his first one done and we hadn’t seen this doctor since. Anyway, she said there wasn’t any new damage, thank God… no ulcers or any thing like that. But his stomach was a raw, irritated mess. She said the same thing about this irritation, which he also had on his first scan years ago…get off the NSAIDs. He’s been on those off and on (mostly on) for ages because of the pain in his back and legs, specifically his Achilles tendon. It tightens up so much, it had tears the last time he saw a rheumatologist. He went off the NSAIDs then, but ended up in misery so the GP he had at the time put him on a “new” pain med that he said wouldn’t bother his stomach. Yeah, whatever. And so now, he’s been having pain under his ribs on the right side, classic gallbladder/stones symptoms, so he’d had an ultrasound the week before. We hadn’t heard those results though and they hadn’t forwarded them to the gastro doc, so we had to wait around to get those. The report from the imaging center only said the tech saw nothing that “needs immediate attention” but the gastro doc wasn’t good with that and told us she’d look at it herself. The next day, they called Tommy to schedule a hida scan.
Hmmm… me thinks there WAS something needing attention on the ultrasound. A hida scan is when they put that radioactive dye in an IV and then have you hang around for scans over a few hours to watch the dye move through the gallbladder. Nice.
I’ve had radioactive dye stuff done before. It’s scary to think about, but apparently I survived without issue (that we know of, at least!) but we don’t want to do that if we don’t have to. Besides, we’ve already knocked this year’s deductible in the head with these tests and don’t want to add more bills to the heap. I’m sure the hida will be uber expensive.
ANYway, so Tommy started looking up stuff on the gallbladder online, which was surprising and exciting. He usually is all, “Well if the doctor says I need to, I won’t question it.” while I’m all like, “NO! Don’t do that, I don’t care what the doctor said!” Heh. And I joined him in the research til we found all this info on a gallbladder flush.
Maybe you’ve heard of this before. I guess I sort-of had during my time working in the health food store, but being the youngster I was, I didn’t really ponder it. Back then, with my fully functional 20-something body, it all sounded gross and like something only old people needed to think about.
Well, guess what, Poopsie! You’re OLD now! sigh
We looked at several sites and watched a bunch of videos detailing what the gallbladder does and what the flush does for you. One doctor said, “If you’re 40 or older, you WILL have some gall stones which may or may not give you symptoms or at the very least, you will have developed sludge (thickened bile) in there which leads to stones.” Sounds delightful, doesn’t it?
When Tommy realized that the gallbladder helps the liver in filtering toxins and such, he was all like, I NEED my gallbladder! At this point, we knew that if something showed on the hida, they’d most likely want to take his gallbladder out. So after months and months of me telling him he needed to change his habits or he was gonna be big as a horse and have a heart attack…he’s ready to commit to changing his diet.
Of course, I have to do it too. And I get that. I mean, I don’t stick with a diet unless he’s at least supporting me if not also doing it too. It’s just easier that way. He’s just not always willing to be talked into being supportive!
I figure a flush will not hurt me either. I mean, I am in that magical area they talked about…”over 40″, so I’m sure I have my share of sludgey-crapola in there too.
We made a run to the Aldi in the next town over since they have so much affordable gluten free and organic stuff. We got organic olive oil and lemons and apple juice. Yes, even though he tested positive for apple allergy, and he DID have some slight allergic symptoms (looking back, that is) after eating apples like a slight scratchy throat, we figure doing the juice instead of whole apples would be less irritating. The pectin in the apples is supposed to soften the stones so they come loose or become soft enough to pass out of the gallbladder.
We read anywhere from 5 to 14 days to either eat 5 apples a day (Gah!) or drink 2 cups of apple juice twice a day before doing the actual flush. Then, you go on a very low- to no-fat diet for a couple days then choose your day to flush.
Obviously, you need to stick close to home/the bathroom for this. So even though we (he) don’t have time to do a full week with the juice before the hida scan (this coming Thursday!) we’re still going to do it. After the apple juice days, on flush day, you stop eating at 2 pm then you begin a schedule of drinking an Epsom salt/water mixture at 6 and 8 pm. They have you lie on your right side after each dose (to allow the mixture to gravitate to the gallbladder). The Epsom salt helps open up the bile ducts in the gallbladder so the stones and sludge can move out easily. At 10 pm, after you’ve gone potty (so you don’t have to get up during the night), you drink an olive oil/lemon juice mixture and go to bed. Again, lying on your right side, as still as possible for at least 40 minutes. At 6 am, you drink another dose of Epsom, lie back down, then same thing again at 8 am and then at 10 am, you can eat. They say very light, bland foods and wait for the “magic” to happen.
By this time, of course, you have effectively given yourself the screaming trots which is the mechanism by which that sludgey-stoney goop is to exit your body.
Oddly enough, none of these instructional sites give any detail about how long or how um…er.. intense this phase of the flush is, but I’m guessing it’s gotta be pretty daggone epic.
On one site where we found this flush recipe, the guy (an Oriental doctor, I think) asks for photos of your results. BAHAHA!! Um, nope. I don’t think so, pal. I’ll be doing well if I can find the handle with my eyes closed to flush the toilet, okay?
Oh yeah, in an effort to keep him from being in so much pain from going off NSAIDs, we are using tart cherry juice and tumeric. I’ve wanted to try the tumeric drink (sometimes called “golden milk”) for awhile after hearing that it’s good for inflammation and helps you sleep. I could use some-a that. So we also bought coconut milk (which, for any T1D out there, has NO CARBS!) and organic tumeric. I made a batch last night and it’s not bad. I was afraid the coconut milk would be strong, but it’s not. I don’t really like the taste of coconut which is weird since I use coconut oil for everything! Anyhow, coconut was a 1 on Tommy’s list of allergies, meaning it was a mild irritant, so we’re going to use it anyway with the hope that getting his gallbladder flushed will relieve these silly allergies! Anyhow, I thought the golden milk was actually sorta bland, so I think I’ll use a little more cinnamon next time. I ended up putting apple juice in it last night. Heh.
So there you have it. You’re mostly caught up on the doin’s around here. Hopefully, this ol’ gal will start feeling better soon. I’ll let you know AFTER I’ve recovered from this flush.
I am seriously over this crud! Guys, I’m still hacking and coughing. I am beginning to wonder what in the heck is going on. Seriously! I’ve had, thus far, 2 Decadron shots, 2 rounds of Prednisone, 2 different antibiotics, every anti-allergy med known to man in varying and increasing doses, dual-dose nebulizer treatments throughout, Dulera inhaler, and Flonase spray along with whatever other OTC/vitamin supplements that are supposed to help. There have been changes, sometimes from day to day, in how this “is”…whether the secretions are thick or thin, whether the congestion seems loose or tight, the cough “wet” or dry, etc. but overall, there’s really not a whole heckuva lot of improvement.
It’s driving me nuts. Besides absolutely wearing me out. I’m exhausted. The house is beyond hopeless and I’m stuck in it all day. I have not stepped foot outside the house since I went to the allergist on Thursday. I opened the back door to wave at one of the boys in the yard. That’s as “outside” as I have been.
I’m scheduled for allergy testing on the 13th which is too stinkin’ long to live with this after I’m past a month with it already. I’m considering trying to get in with a pulmonologist. I mean, I’m sure I need the allergy testing anyway, but I’m wondering if there’s not some lung issue. Why are the steroids not more effective? I mean, I’ve taken them often enough over the years, not often, but enough times to know that they normally produce a noticeable improvement within a couple of days. But with this? No such thing. And I’m sitting here wondering if I should finish up this last course of Prednisone I have. I mean, that stuff jacks my sugars up so bad. It’s like insulin has no effect on it almost. I raise my temp basal as high as it will go, 173% and STILL have to override the boluses to give 2-4 more units of insulin to cover my food. Well, not cover it even, just to keep it below 200.
I’m thankful to have the CGM now so I can keep on top of what my sugars are doing while the steroids jack with my sugars. I shudder to think of how bad they have been in the past when I didn’t have a way to keep such a constant watch on them. Ugh! At the same time, though, watching them stay up there while I’m “throwing” insulin at it as hard as I can is just maddening and more than a little scary. I don’t know about any of you guys, but when I know my sugars are up and I can’t get them down (quick enough to suit me, of course) all I can think about is all the damage being done. All the blood vessels being clamped shut and nerves being killed out or whatever goes on in there while there’s an overabundance of sugar floating around. It drives me nuts!
So here I am. Still hacking, still unable to speak with my actual voice. It’s more like I’m doing the voice of some alien monster thing complete with alternate growling and shrieking. I just wanna get well, y’all. Is that too much to ask?
Alright. Like I said, I’m not a whiner, so I guess I’d better shut this down before I become one. heh Maybe that should be, “I TRY not to be a whiner”? Yeah, probably so.
Ah well…I’m not changing it now! ha ha
I hope none of you guys are this sick. I guess I’ll update you if I get in with a lung doc next week. For someone who never worked in an environment that was potentially lung-damaging or who never smoked (other than a couple months in high school), it sure seems odd to me that this would be some lung issue. It honestly seems like it should be entirely allergy related. But then that brings the question of why in the world aren’t the meds helping, then? I have always been weird with medicines…either it takes a ton of it to work for me (pain meds) or I’m allergic to them (antibiotics) or they stop working…?? Why would that happen? It’s not like I’ve ever taken steroids for long periods of time. I have had them several times over the years, but not for extended periods or even frequently, so what gives?
Argh. I give up. It’s scary to think that there’s some (other/more) weird thing going on that is causing my body to no longer respond to these medicines. What do you do when nothing will heal you? Um…die?
Gah. I need to stop thinking about this. And I need some answers…and um, some relief. “and that’s all I need…” ~Navin R. Johnson
So, after THIS yesterday, it was confirmed via the cardio himself that it’s not likely to be my heart that is at fault in all this coughing/hacking/allergy-ish crud.
He agreed it was probably a good idea to go ahead with the stress test and echo my GP had ordered, but that he didn’t think there was any heart issue causing the problems I’m having now. So they went ahead and set all that up for first thing tomorrow morning here in town.
I am still coughing and hacking up junk occasionally. My GP switched me to a different antibiotic, gave me another steroid shot and a script for a long course of oral steroids.
She told me to hold off on the oral steroids until she could see if there was an opening at the allergist for me in Lexington. She said I could get in a lot quicker up there than waiting for an appointment here.
So this morning, I got a text telling me I have an appointment tomorrow afternoon with the allergist in Lexington. Great. I have no clue how long those tests will take or if I’ll feel like driving myself to Lexington afterward.
I talked to the receptionist at the GP’s and she told me no, I wouldn’t have time to make the Lexington appointment after the stress and echo at the cardiologist, so to I told her I’d rather keep the allergist’s appointment. Makes the most sense to me.
I’ve never been to the office in Lexington and don’t know where it is, so I had to call up there and get the address. Well, that was after the kinda goofy gal tried to explain to me how to get there. Egads! I would much rather have an address I can pop into the GPS, thanks!
So I’m pretty sure I can get there okay. Tommy’s so busy with work anymore, besides all the crap stuff he has on his plate at home fixing other people’s stuff, he can’t go with me anywhere anymore.
Seriously, we hardly have any time together these days that we aren’t both wiped completely out. It really sucks and I’m fighting really hard to keep from being really down about it. Ugh!
Anyway, I rescheduled my cardio tests for Tuesday.
I’m not doing much of anything today. The coughing is intermittent, which is better than constant, but my head is so stopped up and I can’t seem to get any relief from that at all.
In other news, while I was at my GP appointment yesterday, Tommy called to tell me he’d been attacked by yellow jackets on the job.
Gah! He came home one day last week with one single sting inside his upper arm that looked nasty! It had puffed up and was spread out as big as his hand! I gave him some Benedryl and made him sit in his recliner. It didn’t’ take long for him to fall asleep, something else he has needed really bad.
Yesterday, though, he had about 15 stings. He was asking me where the Benedryl was and I told him he needed to get his butt to the ER. He flatly refused and asked if I thought my doc would give him a shot.
Really? Sheesh… I told him I’d ask, but I doubted it since he wasn’t a patient there. Of course, I was right. I told him to take the Benedryl with him, drive straight to his doctor’s office and get himself taken care of.
All this conversation was going on while I was getting my own steroids administered to the butt. Sheesh…
In a few minutes, he called back saying they had told him to get to the ER. (why doesn’t he ever learn to listen to me??) but he was still fussing and making noise as if he wasn’t going to go. I told him, Look jack, I’m sick, I’m at the doctor’s office myself, I already had my shot in the butt, the least you can do is go get yours before something bad happens and you stress me out EVEN MORE than I already am, okay?
That seemed to shut him up with the excuses, but I still wasn’t sure he was going to do what I told him.
In the meantime, however, I had my own doc in the room and needed to talk to her. She switched my antibiotics to the first one she started to give me last week. It’s basically the same thing I had been taking, only a tad stronger. Remember, I have major issues with several antibiotics, so I have to be really careful what I take. But it was pretty clear the Keflex wasn’t doing anything.
The main thing with the Omnicef last time was it didn’t seem to work either, however, that was with an ear infection, so we decided to try it again anyway.
I finally got done in the GP’s and headed up the street to the cardiologist, where I was almost late already. I texted Tommy to make sure he had gone on to the hospital. He said he was in a room already since they had taken him back ASAP.
So I went in and registered. It didn’t take too long for them to call me back. The nurse did an EKG first thing and then left me to wait for the doctor. He wasn’t long either, and asked me a bunch of questions. Mostly he seemed confused about why I was there. I told him I didn’t believe my heart was to blame for the coughing either, but that my GP wanted to be sure there wasn’t something going on since I have type 1 and he agreed it would be a good idea to do the tests.
After I got out of there, I called Tommy again. He was waiting for them to give him a shot. He wanted me to go eat lunch with him. I needed lunch since it was about 1 o’clock by now and my sugar was in the 60’s already.
I sat in the parking lot and ate a few Lifesavers before heading across town to Cheddar’s where Tommy wanted to meet.
By the time I got over there, he still hadn’t got his shot yet, and I didn’t want to sit in the restaurant feeling like crap, so I leaned my seat back and rested while he was getting that stuff done.
We didn’t piddle around eating and then headed home. Tommy stopped by the pharmacy to pick up our collective meds. Mom came by just after Tommy got here. She was checking to see what had happened at the doctors.
Tommy and I had planned to make a run to the grocery store since we are out of a ton of stuff, but we were both exhausted, so I proposed a power nap and then go to get groceries. It didn’t take twice to convince him, so I was almost asleep before my head hit the pillow. He apparently didn’t sleep much. Maybe his shot kept him awake. He’s more sensitive to stuff like that than I am. There’s not a whole lot that can keep me from sleeping.
We got our groceries and picked up a pizza on the way back home. Definitely not the best option since I had a steroid shot running through me again, jacking my sugars up. But it was what Tommy wanted and I couldn’t think of anything else. I emptied the rest of my reservoir on supper, though. sigh
So today, I get a text telling me I have an afternoon appointment with the allergist in Lexington. I called to see if it was going to be possible for me to make it up there after the echo and stress test that morning. They said no, so i asked them to reschedule the tests because I am PRAYING that seeing the allergist will be more helpful than anything else.
I’m still hacking but not constantly. The congestion is a bit worse, but more tight than loose. I’m so beyond ready to be over this. I feel like I have fallen off the world, ya know? It feels like I am stuck here, trying to …well, most of the time it feels like I’m just trying not to die, and the rest of the world just goes on without me. Ugh! I just don’t know why none of these meds are helping. If this is really all just allergies? I mean, the ONLY “new” meds I’ve been given since getting so sick are the steroids and antibiotics. All the allergy medicines I was ALREADY taking on a daily basis.
I just pray that we can get some answers soon. I really need to stop being so sick. I mean, I am REALLY done with this stuff!
Sorry. That old song “Alone Again Naturally” came to mind when I started writing. Maybe that’s not the name of it, but the chorus says that. And that’s how I feel.
You know those memory apps that show what you posted or took photos of however many years ago? I have been seeing them for a good week talking about being really sick. Like, year after year, I am sick this time of year.
Why does it always seem like I’m surprised by it? I just don’t get that. Apparently I’m a lot more forgetful than I realize. Heh.
So yep, I’m sick again. I’ve been doing the hacking sporadic coughing fits thing for over a month. I got this new doctor as I mentioned and she’s really intent on getting me into better health. Bless her heart, I don’t think she knows what’s she’s getting herself into, but more power to her, I say! At least she is willing to try. She’s got me set up to see an allergist in a few days and that meant going off my allergy meds.
I don’t think that’s where my problem started at all. It sure didn’t help things though. And that’s kinda weird too because obviously the meds weren’t doing all they should have, so why am I so much worse now?
Who knows? I seldom stick to the medical books.
I was supposed to go to the dentist this morning to get one of the three trouble-makers fixed, but I was coughing so bad there was no way. I didn’t sleep much and I have a pounding headache that’s constant now instead of just when I cough. Feels like my skull’s gonna pop open.
I really can’t imagine that I’ll hear anything much different from this doctor. I mean, I’ve been to an allergist before a few years ago. They confirmed I have asthma and was allergic to some random things that I don’t really have that much contact with and put me on allergy shots.
I finished out those and saw no change in symptoms. I am just really hoping this guy doesn’t suggest that again. For one, I detest driving to get those stupid shots, then sitting in the sick room (waiting room) until the time’s up.
For two, I am REALLY not interested in doing it when they don’t “fix” me, ya know?
My concern today is that I’m setting up a chest infection. If that’s the case, I don’t think I can wait for another three days. I’ve called my new doc, first thing this morning actually. I haven’t heard anything yet. Strike one, I guess.
*sigh* I had high hopes for this one. I’m not counting her out yet, but she really needs to get in touch with me.
UPDATE: I finally heard from the doctor’s office. As I feared, there’s really nothing to be done since nothing is yellow or green, thus probably no infection. I was advised to just hang in with the saline and use steam and then call if anything DOES turn color. I’m just trying to be thankful that there IS no infection, but when I get to that allergist dude better break out the steroids once those tests are over. Chick is dyin’ here!
I often struggle to explain my “medical stuff” to people. Not that I go around dumping the whole morbid story on everyone I meet. But for those I am around often, they kinda need to know I have diabetes. For others, it just comes up in conversation.
I don’t mind telling people and I appreciate folks who want to know and will allow me to educate them about diabetes. But it can be really hard to explain. It’s one of those things you can’t actually understand unless you’ve dealt with it. Sometimes it just takes having someone who knows explain it to them. Other people just won’t ever understand because they don’t have the ability to sympathize or put themselves in someone else’s shoes.
There are also the times you have to go to a new doctor. Then dumping the whole mess is pretty crucial, but there’s no real rhyme or reason to it so it comes out a big, jumbled pile of bits and pieces of my medical history. I start telling them one thing that relates to the reason I have come to them in the first place (ie: a sinus infection, etc) then they’ll ask another question or it will lead to needing to explain background. It’s just hard to relate 40-plus years of medical history in a few minutes, no matter how much training the “doctor” has, it just doesn’t happen quickly or easily.
Let me stick an aside in here for anyone who happens to read this and has an inkling of what this is like, if you have a good way of doing this, could you please share? I’ve thought of trying to list everything on paper, but it’s not easy, especially at this point when I can’t even remember many of the doctors’ names or what they tested or diagnosed. I can’t remember what year things happened in unless it was major like the 2 weeks in the hospital with Stevens-Johnson Syndrome in 1994. That I can remember since I spent another 2 years recovering from it. But the many, MANY times I’ve been to an allergist or ENT for ear and sinus infections and the various tests they ran and treatments they prescribed? Um, no. Sorry. My mind can’t hang onto that much stuff!
So yeah, in case I’ve never said before, I hate going to new doctors. I feel like I need a moving van to haul all my medical ‘baggage’ into the exam room. I have felt like the doctor was thinking, “What the heck? How many different diseases or medical procedures can one person have?” or “She has GOT to be making this up.” or “This lady and her ton of medical problems are more than I want to deal with.” Now, perhaps NO doctor has ever had those thoughts about me, however, if I were a betting person, I’d bet you that some of them did.
Does that make me paranoid? Maybe, but here’s the thing that you won’t be able to understand if you don’t have a chronic auto-immune disease…going to a doctor, and I’m talking a general practitioner not a specialist, with more than a couple different complaints or health issues is like being an alien. Many doctors don’t want to deal with you. You are too complicated. Others immediately decide that you are somehow non-compliant, in other words, you’re not doing all you can to take care of yourself. You aren’t “trying hard enough”.
For instance, this new doc I went to see this week… well, she’s an ARNP but I really liked her. My mom and my youngest son had recommended her to me because she was so thorough and took her time with them. She did the same with me, but because I was there for a persistent cough, she started with that then started looking through the lab work I had in August. She was telling me everything looked good and asking me if I was on any meds for cholesterol since those labs were good, etc.. then she flipped a page and asked me if I was taking Metformin. Of course, I was puzzled about why she’d ask me if I was taking an oral medication for Type 2 diabetes when I’m on insulin and have Type 1 diabetes. I said no, thinking in the back of my mind that maybe there’s some other use for Metformin that she was going to suggest. Then she mentioned that I should be on it to help with my sugars. That’s when it dawned on me that she didn’t realize so I said, “That’s why I take insulin.”
She flipped another couple pages and then began to profusely apologize. She is a really great, down-to-earth person who has a thick “southern” accent and talks really fast because, or so it seemed to me, her mind is going so fast her mouth can’t quite keep up. *smile* She made a “total fail” comment and just kept apologizing til I said, “Don’t worry about it. I come with a lot of baggage to go through.” and she said, “Well I sure appreciate all the grace you are giving me.”
However, when she then backed up to my lab work and began to retract all the “good job” comments she’d made to me just seconds ago, I felt myself getting really frustrated. And don’t get me wrong, I STILL really like this lady. I think she’s on the right track, is very thorough and wants to help me feel better and be healthier. But this is one of those things that has always just ticked me off so bad. Where she’d thought I had good lab results because they were all within normal range like for cholesterol and blood pressure and such…those were “normal people” parameters. Not diabetic ones. No, a diabetic has to have even lower levels, even better “scores” on these tests.
Yes, I have to test my blood sugar multiple times a day. I have to take shots and count every carbohydrate that I put in my mouth and dose medication for them. I can deal with that. But tell me that I have to have a cholesterol level that is 10-30 points lower than everyone else? That runs all over me and frustrates me more than the unfairness of my daily must-do’s to live.
Is that weird? Am I the only T1D who gets madder than a wet hen about this kind of thing? I dunno, but I left there feeling so conflicted.
This doc is sending me to an allergist she trusts to reevaluate my allergies and asthma issues. She suggested I see my chiropractor to help with the tightness (that she noticed while feeling my lymph nodes, by the way) in my neck and shoulders. She also suggested a $60/hour massage therapist…not gonna be affording that any time soon. When she looked at my feet, which many doctors don’t even do, she got pretty disturbed and told me I needed to wear tennis shoes and not my comfy Chacos and that I needed to go to a podiatrist and “get that skin off there”. I didn’t tell her that what she was seeing was much better than normal! My feet are always really dry with thick callouses and crevasses/folds. And I also didn’t tell her I’ve worn nothing but my Chacos all summer long and I’m not sure what I’ll wear when it gets too cold for them because they are THE MOST comfy shoes I’ve had in years! I’ve worn them hiking through the woods and in the river while kayaking. They are my favorites and I’m not giving them up for some less-than-comfy tennis shoes. So there.
Actually, her response to my diabetes was pretty much the usual for a GP who doesn’t deal solely with diabetics. The idea that all my labs and sugars should be perfect and that I should always maintain a perfect A1c is unrealistic at best and I’ll let her in on that when I go back in two weeks. Is it possible to attain perfect numbers? Yes, it is. Is it feasible to maintain them always? Nope.
Okay, so this has been a long rambly post about how I feel living my life with type 1 diabetes and all its lovely friends…Graves Disease, Neuropathy, Kidney Damage, Early Cataracts, Retina Degeneration. Those are the just a few of the ones who have already showed up to the party.
I don’t want pity. But understanding? That I will take with gusto and gratitude.
I’m unsure how to tell you about this, but since I’ve shared about this here, I have to update you.
First of all, both Hubby and I really just love the pelvic health therapist. She’s an awesome lady who is passionate about what she does. She really wants people, both women and men, to understand how their bodies work. She is a Christian, which makes sharing our story with her even easier and she’s an Emmausite. She has this high-tech way to measure how strong (or weak, as the case was in the beginning) my pelvic floor muscles are and how well I am able to contract and relax. All those things are important to healthy muscle function and she’s given me several exercises that I’ve been doing at home.
She has taught Hubby how to help with stretching and even showed him some massage techniques to help me relax all the tension I hold in my neck and shoulders. Before you get all jealous about that, realize that him knowing the techniques and having had the time to actually DO any of them are two different things. Between him working late several days and then working on his talk for this weekend’s Emmaus walk (more on that later), we just have not had the time. And honestly, I won’t ask him to do it because it makes me feel guilty. So I may never get one of those massages, but at least he knows what he’s supposed to do, right? HA-HA-HA!
Other things she’s had me doing is using pure vitamin E, which is supposed to strengthen and “heal” the skin in my outer hoo-ha. Sorry, I’m not as good at using the proper names for those things. (and would like to avoid being pulled up on Yahoo, ya know?!? Sheesh!) Anyhow, it made a huge difference in the sensitivity down there. I mean, like amazing improvement. I could hardly stand for her to do the initial exam when she used a cotton swab and had me give her a number for the level of pain I felt. Then she had me using a sustained moisture gel stuff to see if perhaps dryness was causing some of my pain.
It’s an over-the-counter stuff called Replens and after using it for a couple of weeks and then feeling a burning pain “way up high” and not so much in the walls of the … heh heh… hoo-ha, she decided I probably needed to check with the gynec0l0gist to make sure there was no infection or other thing going on.
So I’ve done that and the GYN says no infection, but everything looked thin and fragile so she gave me some estrogen cream that I use vaginally a couple times a week. It was like no big deal and she said that I should notice a difference in about a week and could probably do just once a month after the first couple weeks using it 2-3 times weekly.
That’s like, WOW!! Who knew and why didn’t those people tell me already? Like 20-some years ago?!?! Anyhow, I used the cream and a couple days later, the Hubbs and I were reading in the book the therapist recommended. It’s for married couples and is a Christian book about s#x! It’s called A Celebration of S#x. Cool, huh? It’s very educational as far as explaining those things that most of us don’t know about how our bodies work. So we read a bunch in that before going to bed. We laughed SO much because since I had a headache, Hubby did the reading out loud for us. He’s a little dyslexic and will mix up his words sometimes, so when he substituted the word “sectional” for “sexual”, I about lost it. I laughed so hard that I started the asthma going and I wheezed the rest of the time. Seriously, we had so much fun reading this book about how our genitals are made!! BAHAHA!
Later we woke up and began snugg1ing and ki$sing some and well…one thing led to another and we put some of the stuff from our book into practice. We had no agendas, either of us, but we were just enjoying being together. It was nice and something we had not done in AGES. As things went along, without being explicit, we got to a point of attempting to actually m@ke love and most people won’t understand this, but we were able to do so without any pain. That is a miracle. I haven’t been able to have actual interc*urse (I’m trying not to get picked up in some lurid Google searches!) without some significant pain in probably 15-18 years. I’m sure that seems unbelievable to most people, but that’s been my life and the ugly secret we have lived with our entire marriage. If all these years the trouble has been from low estrogen, it really is pathetic that doctors don’t ask more pertinent questions about these things and that we don’t know enough to talk to doctors about this problem.
However, I will remind you now that we did go to several doctors over the years trying to figure out why I had pain with s#x and were either told it was in my head, that I had a deformity or just looked at like we were crazy. So we DID seek help years ago, then just gave up and assumed we would just have to live with it.
Anyhow, hopefully that wasn’t too risqué for anyone, but I said I was going to be open and honest about what we were dealing with, so I wanted to also share the update, the happy update!
Now I’ll tell you that all the next day, I would intermittently be in awe that “it” had happened the night before, almost wondering if it really even happened at all, [think “Is this real life?” LOL!] and then worrying that it was a fluke. When I shared those thoughts with my sweet Hubby, he said, “Well, if it was fluke, we will wait for the next one.”
We are praying it was not a fluke, but the beginning of a new chapter in our marriage. As the GYN said to us in the beginning of this journey, with all the time we’ve invested in this marriage, we owe it to ourselves to pursue a healthy, full intimate relationship together! I thank God that He’s working things out in this area!
Hebrews 13:4 – “Let marriage be held in honor among all, and let the marriage bed be undefiled…..”
A couple days ago, in the evening, I recall my right eye feeling like there was something in it. I lightly rubbed it and the irritation stopped. It wasn’t anything alarming or horribly painful. I didn’t think anything more of it.
The next morning, I woke up and it was still feeling irritated only now it was slightly sore too. It felt very similar to when I had dealt with when I’d had recurrent corneal erosion syndrome a couple different times almost 20 years ago. That thought troubled me!
But I had a meeting to go to at 10 that morning, then a hair appointment at 11, so I headed off to town.
The ceremony for our county seat to get the title of “TrailTown” was happening and since our friends are involved in that and the tourism board, we went to help out. More to just help there be a good crowd, since the governor’s wife was supposed to be there and it was a big ol’ deal.
My eye felt a little better after we left there. It crossed my mind to just deal with the eye, thinking it had to be a flare up of the Recurrent Corneal Erosion Syndrome. I had to leave early and get to my hair appointment and while on the way, my eye became very irritate again, and when I touched it, it felt bruised and swollen.
I immediately called my eye doctor and they were able to get me in that afternoon, a few hours after lunch.
I met Hubby and my eldest son in town for lunch and after that, the eye was hurting really bad, so I went home and got an ice pack on it and laid down for a while.
I took the pack with me to the appointment because it was just hurting SO bad and the cool helped, and it kept me from wanting to rub it so much.
I saw the other doctor in the practice who I’d never seen before. I like her. She started examining me, beginning with my left eye, all the while, I’m explaining about my history with RES and so she puts some numbing drops in almost immediately, realizing how bad it was hurting.
She looked at it again, then put some dye in while I told her about the Stevens-Johnson Syndrome that left scars inside my eyelids, which in turn, rub the fire outta any sort of irritant in my eye.
During all this, I can see she’s getting concerned. She asked what caused the SJS, making sure which antibiotics I was able to take now. Somewhere in that time, I said, “Oh, and in case you didn’t see in my records, I’m a Type 1 diabetic, too.” Her eyes got big as saucers. Poor lady. I tend to have that effect on doctors sometimes.
She looked in my eye again after the dye and informed me that I had an ulcer on it. What in the…? I asked what caused it and did they normally come up overnight like that?
She told me it was from a bacterial infection that was normally from being in a lake or pond. I told her that I’d been dumped out in a nearby river about a month ago, but she said, no, it’d have to have been in the past couple days.
I haven’t even been near a pond or lake or even a pool in that time. So we have no clue how I could have gotten this infection. But I have this “nick” in my iris, just to the outside of my pupil about the size of two or three pinheads. She said she was surprised to find it that big in such a short time after she asked again how long it had been bothering me. Apparently, that was huge for overnight.
Of course it was. That’s how I roll. *pththt*
So she sent me home with a script for some strong antibiotic drops to use every two hours, instructions to alternate ibuprofen and acetaminophen every three hours for pain. She said the ice pack was fine, but no pressure. She said the best things I could do was sleep or watch TV.
I about died laughing. The two things I am best at?!?! *laughing* Apparently, those are the two things that keep the eye most still. She said no reading or computer (oops…I am doing this in short spells just a few hours before I go back for a recheck)
It’s not nearly as irritated nor as sore, so I am hoping and confident that she’s going to tell me it’s very improved.
Exodus 15:26 – “…I am the Lord, your healer.”
UPDATE: Indeed, God is a mighty healer. The doctor was literally AMAZED at how well the eye was doing. She looked at it with that awful magnifier thing that shines a bright light in your eye, said it look awesome and then started talking about putting numbing drops in so “we can pop that thing outta there”… *blink, blink* “Pop what thing out?”, I asked. “The contact,” she said.
“Um…you didn’t put a contact in it,” I informed her.
Then she was REALLY amazed saying she just KNEW she’d forgotten that she hadn’t put one in because of how well it was doing. Couldn’t believe it had healed that much without one. The reason she’d decided to opt for no contact the day before was for fear of trapping any bacteria in there and making it worse. She just assumed, when she saw how much it had healed, that she must have put one in.
*shaking my head* That’s a little concerning, but understandable too. She said the top layer had already formed over the hole and was reattaching. She stained it again and said there was no loose edges at all. She told me the day before, the edges just “lit up” the were so loose. I told her that there had been a LOT of prayer over that thing and she said, “That’s the only explanation for it being this much better today.”
So today, a week later (it’s now Wednesday, July 15) it still occasionally feels as if there’s something in there, and I’m not sure if that’s something that should concern me or not. She told me I didn’t have to come back unless it got worse, and it hasn’t. The redness is completely gone and the bruised soreness is gone as well. I’m still using the drops 4x a day as she prescribed. But that occasional feeling of something in there concerns me.
Honestly, if it still feels this way tomorrow, I may make an appointment with my ophthalmologist who originally dealt with the erosion stuff all those years ago. The doc I saw for this stuff charged me $45 each for both visits, plus what I spent on the drops…that’s almost $150!! I have only ever paid $30 to visit the ophthalmologist and I’d feel better if someone checked it again. Hopefully, he’ll just be able to confirm that it’s healing well. Maybe the irritation I’m feeling is just part of the healing process??
I dunno, but I don’t think I’ll be able to feel okay about it without having it checked again. We shall see…
God’s GOOD!!! I give Him all the glory for how well this has turned out thus far! Woo!
Ugh. I just got back from my regular doctor’s office. I checked my blood pressure this morning and it was 197/101.
Yeah, NOT optimal for health. Gah. I was supposed to be at my therapist’s office at 2 pm, but I called to cancel after the doctor’s office told me to get in there by 11:30 am. I felt bad about that because I canceled last time and I probably really needed to see her this week, but ANYhow…
By the time they got me in and took vitals, my BP was down to 168/79, but still too high. I talked a long time to the doctor with her trying to understand the history of how I came to have this cough, of how I’d been taken off the ACE-inhibitor completely for about 2 weeks, then put on Amlodipine by my endo and then proceeded to have that dry, slight, hacking, persistent cough like I had before, so I went off it about a week and a half ago and now, here I am with high BP despite having done 8 miles on the trainer for the past four days.
She asked a lot of questions. Oh, Hubby was there, too…he insisted on driving me after I told him how high it was, so she began to look up the side effects of Amlodipine and tell me that cough isn’t one of them. Of course, I knew that already, but I also knew that it can cause wheezing and chest tightness, so I assumed that would cause the coughing to return. That’s why I went off the med in the first place.
She came to the conclusion that I had not been off the ACE med long enough before starting the Amlodipine and I was having a lot of allergy symptoms. She asked if I was taking my Allegra and Singulair every day, and I do, religiously! Then she asked about the Flonase, which I tend to forget often. After I use the neti pot, I have to wait awhile for the “running” to stop, and I’ll forget to use the Flonase. She stressed that it was really important for me to use that stuff daily, so I gotta do better about that. She also wants me to start taking a steroid inhaler and to use my albuterol inhaler before I get on the bike. She thinks the cough is caused by all the irritation I have from the drainage and allergies.
I’m thankful that I didn’t have to go to the hospital because when I saw how high it was at home, I felt sure that’s where I was headed. The doctor was impressed that I’d lost about 9 pounds since the last time I’d seen her about 3 weeks ago. I told her that I’d really been trying and she told me to keep it up, that the weight loss would directly affect my blood pressure in a good way. So…*sigh* I have to get back to the bike.
I have discovered why I have such a love/hate relationship with the bike and trainer…or any kind of hard exercise. It’s the sweating. Not that I just hate to sweat, which I do, but most of the time, sweating like that comes when I am having a low blood sugar and totally out of control. I think that’s why I just really hate getting on the bike. Once I’m on and I can see how I’m doing with the computer, I can get past it, but that first layer of sweat just makes me feel SO awful. I seriously think it’s because of 40 some years of that sweatiness being a signal that I’m getting low.
That’s good to know, but knowing doesn’t make it go away. Ha. If only…
Hebrews 12:1 – “…and let us run with endurance the race that is set before us:…”