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4

The problem with being told I'm strong is that it seems to give onlookers permission to let me be, do little, and go on as usual. I hate being told I'm strong because of all the hidden messages with it.

My doctor and I had conversation where I was asked if I really wanted to know about the true nature of this illness. She said, is it better to know than not to know? She said that at least knowing, I can be prepared. She said I'm taking it well and that I'm a strong woman. I'm strong when I can be but when strength is gone I require what everyone else requires, a friend. But if people have the idea that I'm strong at all, I'll get left. People will forget me or maybe they'll push me to the background and go on with life as usual denying that I'm falling apart because it's easier for their pain. It feels so negative. Alone. Labeled strong for the self preservation of others.' Yeah this is bad but she can do it, she can take it.' I hate being called strong.

Today I was neither strong nor weak. I just managed through some severe fatigue and a few flashbacks from the hospitalization. My CNA was here when I was lying down and the flashbacks started. I turned over and dropped a few tears because the thought of doing that ever again is heavy. It took two or three minutes of silent tears and I was able to gather myself. I cry so quietly that unless you're right beside me you may not realize it at all. The CNA didn't know a thing which is exactly the way I wanted it.

As the doctor said, knowing means I can be prepared. I can, and so can the doctors. They know what to look for. They know the signs and how bad it can quickly get. (My heart is so heavy.) So yes, it's better to know what medications, what procedures, what surgeons and what hospital should be involved. We know who will speak for me if I can't speak for myself. Most of all we know this mixed up, emotional, half broken, headstrong woman wishes to live.

Jordan

1

A friend of mine came over and brought fried chicken and a bouquet of sunflowers. It was too sweet. We sat and talked while I ate. I was hesitant to talk about health stuff because I didn't want to depress her. It was a very nice visit though.

Yesterday after I blogged, I went ahead and took a nap then put on an encouraging 3 part movie. I watched 2 parts of it. My goal is to find something encouraging to do when I get medical news that's upsetting. I have to accept what comes but I can also influence my attitude by feeding my head positive things; reading, movies, art and whatever else gives me encouragement. I think it'll help, so will visitors.

I hope my friends will understand how fragile I feel. My strength is flimsy but I'm working hard to keep it. However, I feel like it would take very little to move from appearing fine to showing that I'm not ok. I feel all over the place.

I have confidence in my Vascular Surgeon and my Hematologist / Oncologist. I have confidence that my therapist will be available to me just as he was when I was in the hospital. I am sure my friends, as helpless as they feel, will be just as helpful as they have been. A text, an email, a hug, it counts when nothing else can be done. It means a lot to me. I'm not doing this alone, not by a long shot. It makes it easier, ya know?

I have a beautiful boutique of sunflowers close to my bed. They're lovely. So despite my worries, despite feeling all over the place, I can add sunflowers to my list of things that made me smile today.

Jordan

1

I saw the surgeon today. He didn't smile much at first. I always try to read him when I go in. I asked if he had bad news. I said, am I going to have to do that fight again, another excruciating, painful time? He said yes. I said, you could have given that news a little easier don't you think? He laughed. I said, do you say this with certainty? He said, yes, but your veins and blood aren't doing it right now.

Phlegmasia cerulea dolens. You vicious, evil demon.

I talked to him about the pain and he suggested cbd oil. I said, I'm ahead of you on that one. He said bc of how I clot, it's not a good idea to give me a nerve block or any of those injections. I'd have to stop taking my blood thinner for 2 days each time I needed an injection. He and I agree that I should not risk even two days off the blood thinner. He's sending me to a pain specialist with experience dealing with what I went through. Phlegmasia cerulea dolens in a patient with Lupus. I just shake my head because I have never felt more pain.

It's frightening, but Dr. L said it looks fine right now but his experience says all hell will break lose again. Until it does I have to learn to live without feeling like I have a black cloud over my head, like I'm just hanging around waiting for the other shoe to fall. Part of me wanted to know if I'd have to do it all again because I hoped the answer was no. I wanted him to say the worst was behind me. I hoped I would be a 90 yr old woman causing trouble in the nursing home because some whipersnapper snuck me in some chocolate and wine. What the heck am I supposed to do now? It's only been recent that I stopped thinking each day may be my last. I had a 'why bother' attitude, 'I'm just going to get another blood clot and die anyway.' Only recently have I stopped living like that.

What he said today is sobering but not 100% a death sentence. It feels like it because I barely survived my body the first time. I guess the plan is to keep making emotional progress, keep moving forward until whenever. I'll find a way to thrive and do so with my new furry boy, Joey.

Today I had myself a nice cry on the bed. He snuggled up to me then slept on my hip. He's beside me right now. I just love this guy.

Dr. L suggested I try cbd gel for my feet instead of the regular oil. I'll try to get it some next month.

Thank goodness for insurance. I may be upset about my out of pocket expenses but shoot, I take $17,000 a month in prescribed medication. I would be in serious trouble if I weren't well covered. My insurance pays for my nurse and CNA, too.

I believe chocolate should be covered by insurance.

Jordan

6

Where are my coping skills? Where is my ability to handle my health issues?

I wish I could say I am emotionally better than the last time I was in the hospital but I'm not. I'm just as shocked and stunned asking, is this really my life? Seriously, they were going to take the rest of my foot had Dr L and his team not come in and said you're looking at this wrong. I am shocked at how close I came to more pain! That's what I'm afraid of, the pain. And I'm stuck in the fear of hospitalization trauma. I'm stuck.

How many journal entries can I write where I talk about my health? So I write yet another bc my platelets are low. I'm physically exhausted! I'm emotionally exhausted from the up and down, from the constant medical crisis... one after the other.... I'm just exhausted. And I'm stuck in fear and shock. Can I get through next week without some health issue, please?

I can't seem to get my emotional footing. How do I do that when there's so little time between crisis? Due to health issues it feels like I stay in fight or flight. I keep waiting for the other shoes to fall. How do I breathe again? How do I feel calm inside and trust the moment? I fear becoming bitter!

I've not drawn in a month. Nothing at all. I don't even have art supplies by my bed anymore and I don't care. I have a ton of supplies, no shortage here, but there is no drive. Let me sleep, that's all I seem to want to do.

I don't tell my friends these things in detail. I have tried to tell a few but they seem shocked. They say stuff like, I'm so encouraged by you or you dealing with a lot and you do it so well. I know that's supposed to be positive but I can't reconcile it with how I feel. I am devistated and lost and afraid and tired of crisis after crisis.

Where is Faith? Where am I? I miss the girl who could find light in just about anything.

Me

6

It's nearly 11pm. I'm still up thinking. I feel so desperate and depleted and tattered.

Yes, I'm relieved I don't have to do another surgery and I'm relieved that there's no bone infection, but I'm also exhausted from the fight. Exhausted from keeping my head up as I tread the waters of chronic illness and chronic pain.

The first 12 hours of being in the ER when they thought I had Osteomyelitis, I thought, oh man I don't want to do this. I was so scared but I knew I'd have to get in the zone and muster up strength, but I sure didn't want to. I just wanted to go home and have a regular life. I want the kind of life I assume exists. Most of all, I want to fall asleep effortlessly. No thinking. No flashbacks. No unrelenting pain.

My body is marked with bruises from daily blood thinner injections. I've got small hematomas on my swollen stomach. My feet are scarred up and look like someone dipped them in black ashes. My fingers are numb, my hair is thin and my eyes are weak! My heart is heavy and tired of being sick. Lupus sucks.

I try not to write like this for fear of sounding pitiful, but this too is a very real side of illness. We all fall. I've fallen.

Chronic illness wears a person down emotionally so that all they want to do is sleep and escape. I just want to sleep and escape but night time brings more pain. I swear if I could take my legs off and put them up for the night, that's what I'd do. If it stops the pain then that's what I'd do. After so long it drives me crazy. I just want to scream, "Stop it! Stop it! Stop it! Stop hurting!" Argh!!!

It's going to be a long night, this one. And yeah, I'm going to kick in to coping skills but dang it I'd rather just fall asleep in a way that resembles normality.

I'm not strong tonight but there's always tomorrow.

Faith

I was tested twice more and the final answer is no. I don't have a bone infection. No Osteomyelitis. The infection from the ulcer reached deep, but the bone wasn't infected at all. I'm in the clear on that one. Also, after 2 months and much fuss, the ulcer is nearly gone. I'm not even on antibiotics anymore because they knocked out the infection w the blast of antibiotics in the hospital and oral meds. I'm now on acidophilus supplements to clean up what the antibiotics left behind. So, I'll see the Podiatrist one more time in 3 weeks then I'll be 100% cleared of this tribulation. Boy has it been crazy.

I started acidophilus because there was a concern for C. diff, a potentially dangerous side effect of antibiotics. Acidophilus will return to the gut what the antibiotics destroyed! I can't believe the amount of antibiotics they put in my body. Wow. I'm on a topical antibiotic for what's left of the ulcer but there are no concerns w that.

I was thinking, chronic illness is expensive! I have forked out so much money this month for medications and for equipment for my wheelchair not covered by insurance. Equipment and four of my 16 medications are not covered by insurance leaving me totally broke this month. I could have been a few dollars ahead of myself but I went ahead and purchased the purple, fuzzy robe. Yay, it's here. It's purple and very fuzzy. I love it. It's worth being totally broke for a few weeks. 😁 I don't mind it for this.

In addition to medications, there's a cream my doctor wants me to use on my feet that isn't covered by insurance. I'll purchase that cream for years to come. There are essential oils for pain and anxiety that insurance doesn't cover. Compression socks and TENS units with supplies are out of pocket. Chronic illness is not cheap at all. I'm very happy to be in a much better position financially to cover most of my needs, but I know far too many people go without their chronic illness needs fully met.

2

Fatigue has been my companion for nearly 4 days, including the weekend. I can't seem to wake up for long.

While I still don't have a regular CNA for Saturday's, I do have return visits from CNAs that fit well here. Saturday the CNA arrived at 4pm to 7pm which was perfect for me because I was asleep all day until nearly minutes before she arrived. I slept the whole night and right up to 4pm, I couldn't get up.

When fatigued I barely eat. It's good to have a CNA cook a small meal and nearly force the issue. I had two fried eggs and toast which was the only meal eaten in two days time. CNAs can be helpful in getting basic needs met so I don't go two or three days on a regular basis without eating. The CNAs I have right now look after me very well.

When it comes to fatigue everything is put to the side, even drinking tea. My physical strength is low, eye sight is dim and my memory is affected. It takes a day or so after a battle with fatigue to finally get cognition back to normal, get my body back to baseline and my stomach back to accepting full meals.

I suppose the good thing in all of this is knowing what to expect when I'm fatigued. I know there's nothing major wrong 'just because' I absolutely have to lie down or if I sleep for hours upon hours. There's nothing wrong with my brain. I've not had a stroke, nothing like that. I know what the symptoms are and how to ride it out.

I think it's important to know one's illness and the individual symptoms that come with it. The information can put you at ease.

Now if you'll excuse me, I have a cup of tea waiting, my first of the weekend. Then I'm probably going back to sleep.

Faith

My blood and ANA are better than projected. There are no new blood clots and no infections so things are good. I'm pleased with today's appointment.

I went to see the Hematologist but canceled my therapy appointment bc I couldn't do two heavy assignments back to back. As a matter of fact, I had a more physically taxing appointment than expected bc I had a wheelchair malfunction and had to walk a good distance in a short period of time. I'm uncertain who put the Cancer Center (Oncology /Hematology Center) where it is but it was a terrible decision. It's far. Parking is terrible and if you have a wheelchair malfunction you're screwed! I was screwed but I still made it to see the doctor.

Because pain has been relentless, he asked if I want to go to the pain clinic. I said no. I said I'd continue doing what I'm doing on my own. No thanks to opioids. I'm not interested in addiction problems on top of all this. I fear ending up like others w Lupus, in rehab bc they got addicted. I can't risk it. For now, for me, the decision is to stick with homeopathy, all natural, non-addictive substances and teas.

The doctor calls me his miracle and smiles really big at me. I love it. He spent 3 months with me, every day checking in and doing what he could to save a case he called a 'hemaglobin nightmare.' lol 😊 At the time I told him that I'm the patient he trained for all his career and that I would need him to truly 'show up' and 'do this thing.' There was a lot of pressure but he and the rest of the team did show up for the job! I'm proud of them.

Today I'm tired and in pain yet I feel very alive. I finally got a meal down that I kept down. I had to sleep for several hours after the appointment but that's ok and nothing unusual. It exhausts me to leave the house. It happens but I'm in a pretty good place today despite the physical limitations.

Faith

1

The week has been quite. My regular CNA has been out for a while leaving me with only 2 half days of coverage. It's been difficult to say the least, but it's been quite, no major drama.

Saturday is one of the days I was covered for 3 hrs w a CNA. After taking care of things here we ran to Walmart. Neither one of us thought about going in the afternoon on a Saturday and how busy they'd be! We got there and the motorized carts were all in use. I decided since I'd gotten myself to Walmart I'd try to walk a little bit. So I did. Turns out I walked for 45 minutes!!

After walking my lungs hurt and my feet were tired but I was not in as bad shape as I expected to be, or so I thought. I came home and immediately went to sleep for most of the night. When I got up to go to the restroom, oh my goodness pain!! My feet let me know that I over did it!!! So, most of Sunday has been babying the painful amputation site. My left foot reminded me that it too was traumatized in the hospital and it too was over worked Saturday.

I learned that I can walk in the store but I have to be aware of how long or I'll pay the consequences like I am today. And yet I'm happy I figured out that walking stabily isn't in my distant future but much, much closer.

I know I over did it but I'm proud I took the risk to walk.

Jordan

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