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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

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.

4

I'm home now. What a scare.

My foot is infected again. I went to the hospital and was admitted for 3 days. The wound turned black and scared everyone to death. I was originally diagnosed with a bone infection but the surgeon that amputated my foot as well as his partner disagree with that diagnosis. I had an MRI and saw 5 different doctors. They talked about the need to remove more of the foot but my surgeon, Dr L, does not believe it is needed at this time. Dueling doctors.

In addition to the foot issues I have elevated kidney functions (creatinine levels) and high white cell count. My liver is fine. I have decreased lung functions.

I was given IV antibiotics every 6 hours then every 12 hours, for three days. Now I'm home under the care of my nurse and aide, with oral antibiotics for up to six weeks. This is to avoid having another amputation. If it doesn't work then I will have to have the rest of my foot removed.

While I was in the hospital the full weight of this was on me but I felt like if given time I could muster up whatever is needed to do this yet again. Being admitted on an emergency basis didn't give me enough time to get my head together. Thankfully there was no surgery and I now have time to gather myself for whatever comes next. I can do this. I don't want to but I can.

You know what's coming Sunday? A purple, fuzzy robe! I ordered it yesterday. I'm so happy 😁🌻💜

Tomorrow, after the nurse and CNA leave, some friends are coming over for ice-cream. I can't wait.

Faith

I'm struggling a bit to keep anxiety under control. My pain levels are too high and I've not had much sleep.

Today I saw Dr. D at his office. It was a good session yet I dissociated most of the time. It was as if I sat beside myself the entire time talking to him. It wasn't a bad session, I was just very dissociated.

The building he's in is not handicapped accessible. The age of the building falls before the law required all newer buildings to be accessible to all. So I have to walk a long distance to the front door, up stairs and down the hallway to his office which can be difficult for me now. Today it wasn't difficult, it was excruciating. I told Dr. D that the owner will make the building handicapped accessible when he himself needs the access. Until then, he'll hide behind the grandfather law that allows him to operate in a less than user-friendly way. I suppose a person has to experience the loss of mobility to fully appreciate accessibility laws. It's an annoyance to some but a life line for people like me.

After therapy my pain levels were so high that I required Oxycontin so as not to lose my mind! I took the meds and got under the weighted blanket and cried my eyes out. It's been an awful day.

Besides pain there is an increased amount of anxiety that has gone past my usual lavender fix and gone straight to Clonapin. Add to anxiety a nice infection on my chest from the rash I had due to a Bactrim reaction and you've got yourself one very maxed individual. I scratched the rash and it got infected right, dead smack in the middle of my chest. This time I have an antibiotic ointment.

So, I'm struggling a bit, trying to keep my head above water, trying not to be too discouraged. One way I'm staying encouraged is to do some work in my Gratitude Drawing Journal. I'm also going to read older entries in it to remind myself of the good in life.

I'm behind on reading blogs, answering emails and texts but I have managed to return phone calls to local friends who are part of my support system. In an effort not to isolate, I've accepted visits from friends and from the elders at the Kingdom Hall. I'm trying to do all I know to do to help myself through the depression, anxiety and pain I'm experiencing.

I may be exhausted and bruised, but I'm not willing to give up. I don't feel like throwing in the towel, but I do need a little bit of time to do some self care so I can recharge, and emotionally recover, from an hellacious few months. I'll be back to reading blogs, texting and emailing very soon.

Last but not least, I've still got the same CNA, the one that quit. It's a long, drawn out story about why she's still here, but she is. She and I are in what I call the healing process. We are working out our differences and trying to make things stable, productive and peaceful. We'll see how things progress. During this hard time she is being very helpful. The last two weeks have been really good.

Faith

I collect tea and porcelain dolls. My body collects illnesses.

This is my second round of meds for the infection in my feet. At the beginning of the second round I had a side effect from the medication that caused a rash from my neck to my stomach, front and and back, arms and shoulders. I'm all jacked up with a yeasty rash!

I can only shake my head! I mean really? Can a girl catch a break, please? In the meantime, the infection is steadily growing in size on the left foot.

I could easily get depressed over all this but I'm trying to keep encouraged and keep on going. Taking care of myself and spoiling myself helps me endure things like this.

One of the things that should be helpful during this time is my CNA. For months things were good but right now they are coming to a rapid conclusion. There's trouble in CNA paradise. She and I had a long, long, pointed talk but I'm not sure anything got through. I see this ending soon. The problem is attendance and entitlement. She also lets me know just how expendable I am, which feeds into my abandonment issues. I told her that, but she wasn't able to hear it.

I know my plate is full right now but I have hope that things will soon calm down in a wave of relief.

Tonight I'm having BBQ ribs made in my slow cooker, a small salad and a baked potato. For dessert I'm having tea and carrot cake. I'll end the night by doing a soothing and healing wash in Tea Tree oil, Oregano essential oil and a dab of Lavender essential oil. This will help my chest and back situation. I then have a nice book to cap off my evening.

Faith

4

I've been going in to see the doctor more than normal because my body is having a hard time fighting the infection. The days I've not gone in she's called. I'm also to keep a photo diary of the changes to the wound site, which I've been doing. The infected area changes in size almost daily. It is amazing to see, amazing in a frightening way.

Today the doctor said the test results show I do not have MRSA. She originally feared it, but that is not the bacterial infection we're dealing with. She said it's necessary for me to go to see a specialist who will do x-rays to look at the foot, and a doppler to look for blood clots.

I was nervous about this appointment. I keep expecting the doctor to say there's nothing more that can be done for me. I fear more pain than anything else. Pain of the infection, pain and weakness in my legs, pain of another amputation. Pain. I fear it.

I never, ever want to come close to where I was in the hospital when the pain was so bad I prayed to die! I believe that happened 3 times. Even when I didn't pray to die, when I wanted badly to pull through, I feared I'd lose my mind because of the pain. Pain felt like it broke me. It left a crack in my head and on my heart.

I see in my head the way my body swelled with 70 pounds of excruciating, excess water weight. I see in my head and remember vividly black feet that once held the most painful, huge boils. It was horrendous! I fear ever having to do anything like that again. I fear I will.

The right foot is the biggest issue. The doctor said the meds aren't working but she wants me to try another round. So, more vomiting, more insomnia, ears ringing and other super fun stuff. The specialist will most likely change treatment but for now I do round two of the same.

I see the specialist Wednesday.

I'm discouraged and fearful but still determined to keep going.

It's 4pm, my CNA is gone for the day but we put dinner in the crock pot for me. I'm having roast with potatoes, carrots and green beans. There's a nice cup of tea in my future.

Faith

Three times last week I saw the doctor about my right foot because of the infection. She took a small biopsy to see exactly what type of infection is giving me the blues. I should know Wednesday when I return to her office.

I'm still handling it ok emotionally, I think.

I hate, hate, hate the medications I'm taking right now. They make me vomit, cause panic attacks and insomnia. I hate this crap but I know it's necessary. Last night I tossed and turned until finally I abandoned all aromatherapy and natural healing for a nice, green Clonapin. That helped some but not enough to keep me asleep.

Despite the feet being infected, especially the right one, I've had some really nice things happen this week. Here's my gratitude list :

  1. I was quite shocked and very grateful to receive 3 new, blue blankets in the mail. 🤗 I was so surprised and overjoyed. How awesome. I'm spoiled rotten. LOL. One of the blankets is a weighted blanket! Omgoodness I love it! Total score!
  2. I got a beautiful, large book on butterflies of the world.
  3. Using German Chamomile and Marjoram essential oils on my feet helps with Phantom Limb Pain, as does the weighted blanket.
  4. I had homemade strawberry shortcake with my CNA.
  5. I've had a lot of phone calls and visitors this week. I also got a couple notes which I will add to my card box.
  6. I heard, saw and recognized my first Catbird. Very cool bird.

Faith

4

Content: Anxiety. No self harm. Fill in CNA's friend committed suicide. Regular CNA troubles.

The day has been mostly good but with a lot of anxiety. We seemed to manage it better though. There was an instance when we wanted to cut but Michelle said rather quietly, "May I have some lavender?" We promptly put it in our nose and on our feet to help relax us immediately. I was so pleased she asked for assistance.

Here's some of her artwork throughout the entry.

My regular CNA is on holiday vacation which means I've had a fill in for two days. The first day went fine but today the fill in CNA checked her Facebook status and found out one of her friends killed himself. She lost it right here so I held her while she cried. She left in tears an hour after arriving. I can only shake my head at the amount of drama brought in this house by CNA's. It's not her fault her friend killed himself but dang, I should not hold my CNA like a child while she weeps, but I did.

Tomorrow my regular CNA returns and she's going to be rather upset with me because I spoke to her supervisor about some of the things she's been saying to me that are totally out of line. I talked to her about being on time and she told me if I didn't like her showing up late I could get someone else. (Sigh) I told her she was 20 min late to her shift and it mattered especially since she doesn't stay to make up that time. She said, I was here at 9 am but I stayed in the car to eat my breakfast. (Sigh)

The other day she told me my meal smelled bad. She said, "This stinks!" Then when she was putting Miracle Whip on my sandwich she told me her family doesn't eat Miracle Whip and that it "stinks!" (Sigh) I talked to her supervisor. I have no idea what tomorrow will bring but that's okay because today isn't over and today is half way decent. Despite holding a sobbing, pregnant, fill-in CNA whose friend killed himself, despite interrupted sleep, I've had a decent day. I think the best thing is knowing that Michelle is aware that she can ask for help when she needs it.

I've got enough lavender to last until the end of the month, then I'll hit up Amazon for a large bottle of it.

I wonder why CBD oil doesn't work for my anxiety? I've switched from Medical Marijuana (MMJ) to CBD oil and CBD isolate but they do nothing, zero, zip, for anxiety. I don't think the MMJ did much for my anxiety either. It helped with pain but it didn't do much for Michelle.

I've sipped tea, let Michelle paint and have done some relaxation techniques to manage the symptoms. Right now the anxiety is pretty high so I'm going to get off here and put some lavender in my nose and on my feet. Time to sip some tea and maybe do a little reading. I've still got a few hours left in this day and I plan to survive them well. I think I'll make a sandwich, a large, stinky sandwich.

Jordan

Teach Her How to Grow If ever I needed to hear a mother's wise voice it's now. For many women, we don't have the option of calling mom to ask midlife questions. We end up spinning out here, losing our minds, not understanding that there's a logical explanation for what's going on.

I have laughed at older women and thought they were making too much of hot flashes and such but here I sit at the beginning of what can only be described at hell and I am not laughing. Who knew that perimenopause and menopause would make me feel crazy? ...continue reading "A Mother’s Knowledge – The Menopause Talk"

1

Dr. D and I discussed the paragraph in my entry where I said I feel as though he drops the ball when the issue of suicide comes up.

When I first went in to therapy I was nervous. I didn't want to be there at all because I knew I was going to talk to him about feeling less than fully supported by my therapist on the issue of suicidality. I feared he'd become defensive but he didn't.

I told him that he does ask questions but that its just information, nothing is done with it. It just hangs there. I said, you do ask how I'm doing but there's little of no response after I answer. I explained that when we talk about my anxiety he probes. He asks how I intend to manage it. I said, you are interested, concerned about those levels and it shows because you engage me. I explained that I don't feel the same level of interest or concern when discussing suicide. I said, you know, sometimes I call you and ask one question, "Am I going to be okay?" I started crying at that point and cried through the entire session. ...continue reading "THERAPY REVIEW: Confidence. Being Heard. Suicide. Perimenopause."

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