logo

W is for Whine, Whine, Whine

logo

I know sometimes I go long periods without posting. It’s not because I don’t have anything to say here on this blog–because there’s plenty to say–but it’s more that I’m tired of always whining about my health. It seems since my second hospital stay while here in the Galveston area, my entire world, my entire universe, has revolved around my health.

I can’t just run to the store any more. No, we have to consider the wheelchair, the parking, do I have oxygen tanks that are full, how do I feel? When are my next meds due? I have a doc appointment on what day? Will going out make me sick? Will I be able to handle it and not end up in bed for two days? All sorts of things to consider just to run to the grocery store.

I wake in the morning and the first thing I think about is my health. How do I feel–before I even more–is there pain or not? It makes a difference what I do next. If there is pain, I take certain meds and then lie very still until they kick in. If there’s no pain, I can get up and go to the bathroom.  Then there are my morning meds, my mid-morning meds, my afternoon med and my evening meds. There are pain meds in between as needed, and nausea pills in case I need those. I can’t eat or breathe without thinking about whether it’s on my diet or if I have my concentrator on or a good cannula for breathing.

Then there are the doctor’s appointments. I average about one per week. Not every week, but that’s the average. Sometimes it’s three or four appointments all in one week. One time, there were three in one day, back to back. We told the clinic I was just moving in. Asked them if they would put in a salad and fruit bar for us.

Then there is blood work, test results, hospital testing, hospital stays, and research, research, research about the condition, about treatments, about alternatives. And in between all that, I have to just try to deal with life. Which isn’t always easy when you’re sick all the time.

And so I whine a lot. And that’s what I do with this blog too–a safe place to whine–but I whine a lot. Even here at home, sometimes I whine a lot, though my family tells me I don’t complain much. They say they are surprised by how little I complain–but I feel like I whine and complain all the freaking time. I do try to do as much as I can. I’ve built up so much strength in the past two years. Sometimes, it’s hard NOT to see how much I’ve lost. Because of that, I tend to ignore the stuff I’ve managed to gain back.

For example, on the way down, I lost the ability to go places without my oxygen. Two years ago, I stayed overnight at a hotel and didn’t have to have oxygen with me. Last year, for Valentine’s Day, I had to take my oxygen concentrator with me and we put it in the bathroom so it wouldn’t keep us awake. We went to a buffet gourmet brunch a few years back and I walked to the buffet line and carried my own plate. When we went again this year, I had to use the wheelchair AND the oxygen and someone else got my plates for me.

So sometimes all I see is the loss.

But there is gain. When I was first released from the hospital with the congestive heart failure and pulmonary arterial hypertension, I could barely sit up for any length of time. I slept a lot, most of the day, in fact. When I did wake up again, I was groggy and foggy throughout my day. Getting up to go to the bathroom was an ordeal and I would de-sat into the 70s, WITH oxygen.

Now, two years later, I can walk to the bathroom and back as long as my back isn’t ‘out’ on me, and most days, I don’t desat any lower than about 90, and that’s on 2 liters of O2, instead of the 5-6 liters I was on. That’s progress. My heart rate used to go through the roof (160-180 easily upon standing and walking just a few steps) and now, I only go up to 120, and that’s after I’ve been walking for some time, and it comes down super fast. My blood pressure is below normal again–for a time, it was through the roof with the heart failure. I’ve been able to reduce my medications from over 22 different pills per day down to where I’m only taking 7 medications. That makes me really happy, and we’re reducing the dosage on two or my meds now.

I gained a lot of fluid weight and weight during being sick. Since I’ve been on the mend some, being treated, I’ve lost weight, and I plan to keep losing more. I’m also able to keep the fluid under a lot more control than when I was first sick. We never thought we would see the end of the fluid overload, but it’s finally starting to slowly go away and I’m feeling better and looking better for it too.

So it’s not always negative; I just sometimes whine a lot. Or maybe it’s because I don’t need to ‘talk’ about things when things are going good, and I definitely use this blog as a form of therapy for me, a place to rant when no one else wants to listen to me whine one more time about the same thing. It’s a good therapy for me, but I imagine whining gets old no matter where or how you hear it.

Speaking of whining, did you see that W is for Whine? Well, the A-Z challenge was over in April and I’m still working my way through–but I’m determined to finish! Almost there!

Enough whining for today! Time to go make breakfast. I’m trying to figure out a vegetarian dish for breakfast this morning–I’m hungry!

Love and stuff,

Michy

cooltext939920976

Related Posts Plugin for WordPress, Blogger...

Comments

comments

6 Responses to “W is for Whine, Whine, Whine”

  1. I hear you on the whining- I feel like that is all I do. You, on the other hand, do not whine that much- I would be a lot worse if I was you.

  2. Farah says:

    It’s okay to whine, even if it gets old. That’s what close friends and family are for. You have every right to let some steam out with everything you go through, every moment of your life. I’m just glad your overall health improved some. That’s awesome! I hope it continues to do so.
    <3 ((HUGZ))

  3. Stephanie Cluck says:

    My husband was diagnosed with CTEPH in February, after months of misdiagnosis. They believe he’s had it for years. He’s miserable and waiting on surgery. He can’t get in to San Diego until October 8th. That seems like such a long wait for as sick as he is. It’s OK to whine, we totally understand. I’m so relieved to read this from someone else’s point of view. We feel so alone sometimes.

    • Michy says:

      Wow… I know October seems like a long time, but it’s really quite fast for San Diego from all I’ve been told. If San Diego doesn’t give you favorable news, I’ve been told by a few people that they are offering the PTE in other locations now and one of them is doing surgeries that were turned down by San Diego.

      Please, do stay in touch. I’d be very interested in knowing if your husband is eligible for the surgery and how it goes–it’s quite scary to think about, but a potential cure is an amazing thing. My love to you both.

  4. Stephanie Cluck says:

    Thank you so much! Right back at you! Our doctor here in Tulsa had told us to expect to go right away, so that is what we had planned until they gave us the October date. We will actually leave September 25th, for testing to begin on October 1st. Thinking about a cure is amazing, but the surgery seems overwhelming. Your post was so real as to simple things like a trip to the grocery story being so difficult..those things have put him in bed for days. We have three children at home and it’s been difficult for them as well because he’s been so involved with them and now cannot do much. I apologize, I didn’t read far enough to know whether or not you can have the surgery, or are? I would love to stay in touch. I found your link on facebook and sent you a request.

    • Michy says:

      Did he have a blood clot that you know of prior to the symptoms? It doesn’t surprise me that he went undiagnosed for so long, because it’s so rare, no one thinks to consider it. It delays treatment, and that’s bad. Is he on oxygen therapy now? That makes such a huge difference in how I feel… that and the metoprolol that helps control my heart rate. Since getting the meds squared away and at right levels, I feel much better than I had before. There was a time when I couldn’t do much more than lay around in a recliner and breathe as slowly as I could with the oxygen mask. Now, I can walk some and do some things–there is improvement and hope, even if it doesn’t always seem like it!

      As for me and having the PTE surgery: unfortunately, I am not currently eligible for referral for the surgery because of co-conditions that would limit my ability to survive the surgery. We’re working on getting eligible, losing some more fluid retention, and getting off the steroids I’m on for the adrenal insufficiency (they are hoping my adrenals will choose to kick back in)…. so it’ll be at least a year before I am even eligible for referral. Also, I don’t currently have insurance. I should have Medicare coming up in September–so that will help me get all the preliminary testing I need for referral too–such as the right heart cath (I’ve never had one yet, due to expense) and a third V/Q scan to confirm the diagnosis (I’ve had two, both were mismatches, but they only consider it valid if it’s been one year since original diagnosis and mine was about seven months after the diagnosis–so they need one that as over a year after.) Once the Medicare kicks in in September, I can get those tests out of the way and then see if I’m eligible again for referral.

      It’s tough–I’m not sure if I want to be eligible for referral, because the surgery is so scary! I can’t imagine going through it all. There is a friend of mine I ‘met’ here online who has commented here on my blog–she had the surgery last year and she still has residual PH after the surgery. It’s much improved over where she was, but it has to really suck to go through all that, be in a coma, the pain, the scars, and then still not be cured too.

      This disease sucks, plain and simple. I am so sorry it’s so hard for your husband. My children are grown (son is almost 19, daughter is 25) but they both still live with me now. I can’t do all the things I want to do with them, but I can’t even imagine having younger kids and being like this. It would be nearly impossible!

      If you ever need to talk or need to blow off steam or anything else at all, please let me know. If you are eligible for the surgery and they schedule it, let me know if you want to organize an online fundraiser–I’ll help promote it and get folks to donate. The surgery is expensive, and the co-costs are often not considered. Insurance will pay a huge portion of the medical, but doesn’t pay for meals, aftercare, hotel, etc. There is a house there for folks who are having the surgery and for cancer patients (their families can stay there for $35 per night and it includes food too), where you can stay during the surgery and recovery.

      If there’s anything I can do to help–anything at all, please let me know!

Leave a Reply

Your email address will not be published. Required fields are marked *

logo
logo
© 2012 - All Rights Reserved by Michelle Devon