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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

3

I've been so sick that I've not been eating much. I've wasted a lot of food because I was in too much pain and didn't want eat, and it spoiled. So I made a decision, take the wasted grocery money and buy CBD oil again. I hadn't been able to afford it at $50 for 1000 mg. Anything less than that is a waste of my time, it isn't strong enough. So I did it today, dipped into my $200 a month grocery budget and got the oil that makes a big enough difference that I can stand to even live!

It's been insane trying to get pain relief from the doctor because I have to keep hearing about the opioid crisis! I told the doctor it's not my crisis and I'm in pain. I'm in pain. Legitimate, well documented pain. Doesn't matter. I'm not going to get assistance with this other than CBD oil. I mean, they want to inject me with some crap which doesn't work but they won't give the real help.

I wrote a bit back about how expensive chronic illness is. Today I made one of those decisions that we chronically ill make. Groceries or medicine. It should never come down to this. I know I'm not alone in making such drastic decisions.

I ate two meals today. Two, because the pain level was low enough to allow an appetite.

Faith

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. šŸ˜ 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

I smiled every time the doctor or nurse walked in the room. I smiled at the Radiologist, Podiatrist, Hematologist, Wound Team and the vampire, blood sucking Phlebotomist. I'm not an easy stick and hate getting my blood drawn, thus the name calling. Anyway, I smiled at them all, genuinely, because I was greatful for good care.

The partner of my outpatient Podiatrist saw me at the hospital. That doctor did the same as her partner, she did the debridement without numbing the area first. I hate that! I wonder if they've ever felt it? If so, they'd know that it hurts terribly. The other two times it was done by her partner I managed bc I couldn't feel much. This time I cried pretty hard because I felt that razor slice each time. She finally stopped. I was quite relieved. The second time she came I didn't smile at her. I couldn't.

I'm thankful to everyone from the person who cleaned my room to the CNA's who brought warm blankets. I was treated well by doctors, nurses and transportation personnel. The best way to show it was to smile and say thank you.

Thank you to the individuals who knew I was in the hospital and wished me well and offered prayers. You are very much appreciated.

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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