It turned out I did have a UTI. I ended up going to the Saturday clinic at my GP's office. The doctor doing clinic that day was hesitant to put me on an antibiotic so soon after 2 months on vancomycin, the body builds a resistance. Lucky for me, it was a very mild infection. Not the full-on assault on my bladder as UTI's in the past have done. I got some stuff that turns the pee orange and some stuff that turns it blue. I was anxious to see what I was going to get. I am happy to report that apparently orange is the dominant color, albeit there was a small hint of light purple. Like the color your tongue turns after you eat the entire package of Fun Dip. Remember those? Can you still get that?
The cough. I had wondered for some time when the cough would come. When it did, there was no warning. No slow leading-up-to. Just whammo! Its here. I was eating dinner a couple nights ago, and when I swallowed a bit of food, it set off a coughing fit. It's not constant. But it's to the point now that at times I have to mentally focus on not coughing, the urge is always there. Most times a cough or two will clear it. Sometimes not. Sometimes the "tickle" is like a stab in the throat, and Its ON! Now! I usually have to head to the bathroom because 1) I have an old bladder (I'll leave the rest to your imagination) and 2) the gag reflex doesn't take long to kick in and I'll need something to hurl in. So far the fits only last about 5 minutes. At the end, the cough gets "wet" and phlegm comes up and its all over. Maybe a few more coughs for a few minutes and its done. Between the coughing fits, I cough. Not a lot. But enough. Its consistent that's for sure. Enough that my chest stays sore now from coughing. And I've always got a slight headache. Downer.
The home draining is working like a charm! We're getting about 200ml every 3 days. I've given up hope that the lung will ever stop filling. Its just not going to happen. But the equipment is functioning, and that means everything. A non-functioning tube is not a good thing, as I found out. The hard way.
I've run a bit of fever a few times. One time it reached a full 100f. I've continued to attempt to taper off the prednisone. I don't seem to be getting as far this time. I'm stuck around 16mg. Lower than that and the fever comes, the chest gets tight, and breathing is shallow. I'm going to continue to try, but I'm afraid I've reached my limit this time. Another downer. I wonder what doctor wonderful will have to say about that.
Still No Income
Last time I got paid was 6 June. I'm up to my eyeballs in medical bills, and still no income. ABC says my package was transmitted to OPM on 13 June. OPM says they didn't receive it until yesterday. YESTERDAY! So one of two things is true. Either ABC lied and it wasn't transmitted until yesterday, or! It was transmitted to OPM on the 13th, and it sat in a que for 3 weeks until somebody got around to it. I'm leaning toward the latter. I ran out of available cash last week. I exhausted my credit card for gas and groceries. I'm down to about $38 in a small savings I have in town. Within the next week, utilities will be due, my loan payment was due yesterday, I've left just enough on the credit card to cover Netflix that will auto draft this week, and the wireless bill because I'm on a contract for that and they'll sue me. My house insurance will auto draft on the 10th and I'll be in the hole. My cell phone bill of $40 is due next week. I called OPM and that's how I found out that they had only just received my package (yesterday morning). That's why I've not received my interim payment. I expect that, now, sometime next week. Fingers crossed. I started looking for it last Monday, so you can imagine my frustration by Friday (yesterday). So this guy says that my piddly pension should start first week in August. Also, the paper work that I had to have both our signatures notorized for the monthly payout from my investment account, the Mr. forgot to date his and neither I nor the notary caught it. On page 4, I forgot to indicate *100%* in a spot they needed it. These two things stopped the entire wagon-train. Got Pam to print them out for me and got them resigned and renotorized and refaxed. On a good note, I spoke with the lady at TSP and she said my monthly should start up first of August too. So it appears everything will come at one time. Its going to be a rough road financially. Oh! I owe roughly $1,800 in medical bills, my hospital bill alone before insurance, was $170,000. A huge stack of them sitting on my dressing table. Just sitting there. Ok I'm lying...they're scattered across the floor in my bed room. It is what it is. I went to the hospital and spoke with a financial counselor there. I can't start a payment plan until I make a payment. I have no income at the moment. I started to cry, right there in her office. Blabbering about how much this illness has cost me, and I'm broke blah blah blah. Bless her heart. She looked at me and said "honey, I've been right there. I was up in here last year for 3 weeks! I almost lost every thing. And my boyfriend ended up losing his car so he could pay my bills and take care of my son. Don't you worry about these bills! Its gonna be ok" and she got up and came around and hugged me! What a sweet sweet spirit. I hope she gets blessed real good.
Where I Am Mentally
Not in a very good place, that's for sure. I'm quite sure that part of what is wrong with me is that I'm just completely sleep deprived. I dread the night time now. Rare is the night I sleep all night. No actually, it doesn't happen anymore. If I take 2 Tylenol pm and 2 benedryl and bed down around midnight, I will still have to get up to pee at least once. And now factor in the nigh-time coughing fits. Some nights its two fits, but at least one. The restless-leg is a nightly monster I wrestle with. The legs tag-team each other all night. At least I can say, so far, I've not had both at the same time. As it comes on, the leg that is on duty, begins to ache. And the foot of said leg, becomes extreamly "sensitive" to the point that its almost painful to touch it. Aside...I wonder if this has anything to do with the mystery of why the skin on my feet, almost over night, went from soft to alligator...but anyway. So yeah, one leg for an hour or so, then the other one, then they switch back. All night. As you see, going to bed doesn't mean what it used to. I can catch a nap during the day, thankfully.
I'm more depressed than I've ever been. I've lost hope. I see no future. No getting better. Nothing but these "four walls" and alone. Yes, I have a husband. But I really don't want to go into all of it. I'll just say there are issues. I would never disrespect him in that way. And its true that there are always 2 sides to every story. But I don't have a lot of emotional support. My family, I don't hear from them much. My dad is 83 now, he doesn't get around too well. My 4 brothers have their own lives (I'm the baby, and the only girl). I have 3 friend-girls of whom I am so grateful to have! They are a blessing, and have been there for me a lot. Sam would indulge my love for Vera Bradley products, and take me to get egg drop soup at lunch time when my tummy was ikky. Pam. I have a connection with Pam that I have with no one else. Pam understands me because she came from a very similar situation that I'm in. I can talk to her about things I can't talk to anybody else about. And Leslie. My true heart friend. Who went out and bought me underware on her lunch break the day the doctor had decided I was not going home just yet. I cried and cried, and then I called Leslie. I wasn't going to get to go home, I cried! "And I'm out of clean underware!" She took her lunch break and went to the Balli Hanes store at the outlet mall and bought me 12 pairs of cotton underware! God bless her!! She also brought me a bag of Halo oranges. Leslie is benevolent, and has a heart the size of the moon. She also crochets. I help her out with patterns because I've been pushing the hook since I was a kid in the 70's. She says she's my "little grasshopper" (say that like Mr. Miaggi). But my deepest troubles I can't talk to her about. Leslie never lived a life like I did. She can't relate. I don't want to say her life was "sheltered" but compared to what I grew up in, yeah she was. I don't mean that in a bad way. Matter of fact, I envy her that. She means the world to me. But I know there are things I can't talk to her about. Nor Sam. Sam is the mother of the rest of us. Unless you want her to attempt to "fix" you, keep your troubles to yourself. She swoops in and fires solutions at you like a machine gun. "did you think of trying this..." "what about...…" "I think you should do this..." That's my boo. I love her to pieces. She's a beautiful woman inside and out. But only Pam can I *really* talk to, about the deep stuff.
I say all that to say this. I don't even feel like I can confide in Pam. Not that she wouldn't listen, but what can any of them do? All they can do is listen, and sometimes that's all I need anyway. But there are no real solutions here. And honestly, I'm getting a little scared because I have no clue what is next. I believe part of my problem here is the loss of the anti-anxiety meds. Everything it suppressed has come back. The terrible feelings of anxiousness, the panic attacks, the constant worry that is so consuming it some times puts me in the chair all day semi-catatonic, without speaking a word. The constant inner turmoil. Debilitating. But I'm off them, and I'd like to stay that way. I'm hoping I can. That goes for the pain meds too. I'm off them now. But how long will it take before I can't stand the pain. My pain level doubled when I stopped taking them. I never realized just how much pain the meds were taking care of. I want to go as far as I can. I'm afraid the time is coming I will have to take the pain meds again. That's assuming I can get them now. Its getting to the point that only cancer patients get good pain meds. Not to dis our brothers and sisters in sickness battling that. But cancer isn't the only thing that kills, and its not the only disease that hurts. I've said it before, I'll say it again. I'd rather be hooked, than hurt.
I feel my best when I first get up. I've been sleeping until nearly noon for days due to the not sleeping all night. Once the legs settle and the cough stops, I drift off. I'm at my best the first six hours or so. By 5 or 6, I begin to head south. Wednesday night was a good one. I had to take an Aleve and extra pred to achieve it. But I had a nice evening. It was wonderful. I lost my beloved Aleve after the blood clots incident. The blood thinner keeps me from it now. I've been thinking about getting some St. Johns Wart next time I have money. I've heard it can help with depression and anxiety. I have never taken it.
Sometimes I'm so down and depressed, I do think about ending this. Sometimes I'm so tired of fighting, so tired of losing. So far I've won some major battles. But I know I can't win the war. Its like a battle till the last man is standing, your man. Dying doesn't scare me, I'm confident I'm on the right bus. But the process of dying scares the hell out of me. I don't want to suffer, who does? I don't believe we're in control of that. Or at least our control is limited. I believe there are just some things we have no say in. The truth of the matter is, I'm too chicken shit to do anything. That and I just don't believe in playing God. All our days are numbered. And we're not the ones who determine what our number is. That's what I believe anyway.
Only God knows how much time I have. But the way this cough came on, the way my lungs feel, the ground I lost with this last infection. I can't help but think I'm coming down to the wire, the station is way off in the distance. But I can see it, just. I've been re-reading the blog Diary Of A Dying Mom, just to try and gain some insight into this cough. She died in 2008 from Scleroderma that affected her lungs. Scleroderma is autoimmune. The lung issues are the same as with RA. She talks about how her coughing fits lasted so long, and left her on the floor covered in sweat, and completely spent. A cough so bad, she was on narcotics to help control it, but nothing completely silenced it. She talked of how sometimes she couldn't even talk because it would set it off. I know the feeling. Or at least I'm learning it. I'm not where she was yet. I just wonder though, how long it will take to get there. I keep thinking I'm going to find something she said about it that included how she might have managed it on her own. Some tips or something. I can't find anything. Matter of fact, I haven't found much at all even on the internets. All I get is articles and sites describing the medical part, but nothing on how to help manage it yourself. Because of that, I'm going to talk about it here. Someday somebody might be looking for the same thing as me. Maybe they'll stumble here. If I can do anything to help somebody else, then it was worth it. Even it its just moral support. The way my lungs feel now, 8 months...a year more...maybe. I just know how I feel now. I know the statistics and the numbers.
Another Project Or Two
I've been thinking a lot about my life. Where I came from. What made me who I am. I remember that scene from Bridges of Madison County where the kids are reading the journal at the beginning of the movie. Meryl Streep is saying how it becomes more important as we inch closer to our end, to be known. Known for who we really were. That scene has always resonated with me. I started thinking how very little my children, and even my husband to a great extent, know so little of my story. He knows a great deal, Pam knows a great deal. But nobody knows it all. Once my mom passed away anyway. I was thinking about doing some essays about my life. My young life here in town, my teen years in Corpus Christi (it was the best of times, it was the worst of times). There's so much to tell. There are some things I will take with me to my grave, things that I will never share because it would serve no purpose. I fell in love the first time at 16 and was engaged for a short time. My children have heard me mention it a few times, but they don't know the whole story, they know nothing about him. My youngest met him briefly when he was 5, but that's the extent of it. It was a great love story that ended badly. I have many memories of my life before I got married, that I want to tell. To share with them, because its my plan to leave the address to this blog in their letters. So they can come here and read. I want to record my memories while I still can. Time is already beginning to steal small details. Bare naked truth.
Another project I want to start are afghans. And a bunch of them. I learned to crochet in 1978 when I was 11 years old. I took to it like a duck to water. It just came so naturally. I've always been "crafty" like that. I even taught myself how to knit from watching youtube video's 5 years ago. I was telling the hubs just this afternoon that I had reached STABLE. He asked what's that. I said its a term used in the yarn world. An acronym that stands for Stash Acquisition Beyond Life Expetancy. I have enough yarn to blanket the town. There are still a few on my list that are due to get a blanket before I croak. I just feel I *really* need to get going before I run out of time. Here's one I've picked out to start.
Please note the web address on the picture to the designers website.
This is not my picture.
Yarn deliciousness! It must be said, I have never found a pattern I couldn't do. Till now. I'm actually having to practice this!! This is extream crochet, and requires some seriously fancy hook work. Its not relaxing "tv crochet". But I will do it! I can do the stitches, I've just not got a lot experience in this new "surface crochet" that's all over the craft world these days. It will just take some practice. I'll post pictures as I get along. I just need to keep busy, some how, to help quiet the voices that constantly remind me how dire my finances are, and how uncertain my future is.
Since I've been thinking about doing this life-story thing, I've been going back to the music of my younger years. They really make the memories flood over me. And I've even rediscovered some that were my favorites that I'd forgotten about. Like the one below that I'm leaving you with today. I was a newly married bride in 1987 when I first heard this one, 20 years old. I stumbled across it a few days ago, and cried. So many wonderful memories of being newly married. I've probably listened to it a hundred times since. Music tends to take me back because radio and music have always been a big part of my life. When I was a teen, I slept with the radio on. I can hear an old tune, and immediately I'm remembering something that I relate the song to. "oh I remember the first time I heard this, I was at a party blah blah..." Its a way I remember things. I want to add pictures too. I'll have to be thinking about this over the next few days.
Its past midnight now, and my body is so sleepy. So far, the legs are quiet. Is it possible? Naaa, probably not. I'm closing now. Enjoy the song. I sure do!