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.
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.
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.
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.
After the amputation there has been significantly less CRSD pain. I will not attempt to explain it bc I don't know if it's a combination of the nerves and pain medication making a difference. I simply don't know why there's less CRSD after the amputation, but there is. I could be bc the nerves down there died. I just don't know, but I believe there is a significant difference nearly a year after the surgery.
The last few days there's been Lupus pain and pain associated with nerve damage. There's no burning pain like what happens when CRSD rears its ugly head. The Lupus pain aches deep though. It's relentless. The last three days have been pretty bad for me. I'm not just fatigued I'm weak, foggy in the brain and hurting from head to toe.
As if Lupus isn't enough, there's the anemia that I'm dealing with as well as lack of appetite for the last few days. I forced myself to eat two days ago but I've had nothing but Saltines since. I'm not hungry. I'm just tired, so tired at times that I have to sleep right then and there!
Soooo, those are my complaints for the day. Argh. It's a Lupus life!