Physical Therapy

Somehow I have made it to my third week of physical therapy! It still exhausts me, but I know I'm getting stronger -- even if it is slowly. After each session I come home and pass out. I never realize how tired I am until I sit down. I'm usually asleep within 10 minutes of getting home.

Today I might paint. I don't know why I want to, but I do. I haven't painted seriously in several years now. I don't know what I want to paint, but I can feel what I want to paint, as odd as that sounds.

Writing is difficult. Lately I have been feeling so very uncertain. It's as though my mind blanks out every time I try to express myself. I haven't been talking to anyone and I've been sleeping constantly (which is mainly due to the physical therapy). Perhaps it's the new medications, but I just don't know.

I'm terrified of this winter. Chicago winters are always rough, but this year is supposed to be worse than last year, which was a rough winter. I'm so nervous... My lupus has been acting up badly, especially as it gets colder at night. My cane wrist and shoulders are driving me crazy, along with my ankles. I mean, a LOT of my joints ache, but not like these. It's overwhelming.

All I have done these past three weeks is sleep, and all I want to do is sleep more. My depression has been getting darker and stormier. At my last doctor's visit I cried a lot and told him I want off the medications that aren't helping. But how can we tell...? I'm gaining weight again from the medicine. I haven't been eating a lot -- although I was before. It's odd. I've always been bigger, but I have never really wanted to eat a lot.

I feel hopeless.

It is as though every time I think things are as hard as they possibly can be, things get worse. Much worse. I've been in this black circle of muck and have been for a year and a half -- longer, to be honest. The same thoughts go through my head, over and over again.

It's hard to even write this. The pain and the fatigue are so bad I can barely move, let alone think clearly enough to type. I've barely talked to Kolton in days and my family have heard few words. I haven't been talking to anyone... Just laying here, crying, sleeping, trying to become numb.

Mom's cancer moved to her brain. We found out last week? I think? Time is really blurred. 10 radiation treatments should get rid of the tumors. I don't know if I'm going to post that... It makes it too real. I've told Kolton and one of my other good friends, mostly because Kolton was at work and I needed to talk and he was there. I feel bad, I keep thinking of all these things I should be doing -- I need to email Sam, I need to call Chris, I need to text other friends out here, I should make sure people are still visiting grandpa at the nursing home like they were before mom went into the hospital... I should be cleaning the house, preparing for any visitors. I should be making sure people are visiting mom. I should be doing my chores and feeding my family. Instead, I lay here. I can't do anything BUT lay here.

Pain levels are even higher than they were before. My whole world is falling down around me and I just can't hold everything up any more. I'm so scared.

What a long week!

It's been a long few months. I have several drafts on here from months ago that I never finished. I really need to finish a post I'm working on about my favorite pain creams.

Last Wednesday my grandfather fell while getting out of bed and hurt himself. He didn't hit his head, but he kept saying that he felt off. We ended up having to call an ambulance to transport him to the hospital to get him checked out. He was admitted as a precaution (he is 95!). All of the doctors were amazed that my grandpa doesn't take any medications other than baby aspirin and a supplement. He stayed at the hospital for a few days and then was transferred to a rehabilitation nursing home. He looks SO much better! After he fell, he kept saying that he felt as though all the life was drained out of him... He was so very pale. But now he has his color back and looks healthier than he has in a very long time. The doctors at the hospital confirmed he has Parkinson's Disease... But we've suspected that for a long time. While he was at the hospital, they started him on a medication for the Parkinson's and the shaking in his hands is almost completely gone! The medication isn't going to slow the progression of the disease, but it will help the symptoms. He looks healthier than I've seen him in a very long time.

These past few weeks I have been very stressed, which has caused a flareup of both my fibromyalgia and lupus. The lupus has been the worst though! My joints are killing me -- especially my ankles and wrists. Other joints hurt a lot too, but not like my ankles. It's awful. My legs have been swelling up like crazy because of it. I found my Nike sandals (with the bumpy, massage-y type sole) which helps a lot. My feet have been swelling to the point where some days I have problems wearing my gym shoes.

Anyway, hopefully I'll post my pain cream post later tonight or tomorrow, depending on how bad my wrists hurt.

I hope everyone is doing well!

Spoonie Love,
Jen

It Never, Ever Ends

Mom had chemo on Friday and was doing okay. It has been about 3 weeks since she got out of the hospital, if my mental calendar is right. Friday night she came down with a very slight fever, but it was nothing serious. The slight fever persisted on Saturday too. However, Sunday morning she woke up with a 102.6 fever around 8 AM. It decreased to around 100.0 degrees by 10. I had a study date at the library with Kolton and so I left the house, with my youngest sister sitting with mom to keep an eye on her. Since her fever was going down steadily and I really needed to get the time in at the library for a paper, I didn't really think too much of it -- especially since my sister and dad were home.

I got a text around 2:30 from my youngest sister, Shelly, stating that mom had been admitted to the hospital for at least the night. Her fever kept increasing and it is better for her to be at the hospital with a high fever instead of at home... Especially two days after chemo. I wanted to go home so badly... I knew I wouldn't be able to do anything and I needed to focus and finish studying, so I stayed out. I was really upset too... Blah...

After I got home, I couldn't fall asleep. I took my sleeping pills, no luck. Melatonin, nothing. I was so desperate by 4 or 5 am that I tried a sip of butterscotch schnapps -- nothing. I still haven't slept. It's been ... 27 hours since I've slept. I'm exhausted but just can't sleep, even though I am running on empty. I doubt I'll get sleep for quite a while, I'm just too anxious. She was hospitalized only 3 weeks ago... I'm really scared... I know she is fine, but... I can't help but worry.

I can't even go visit tonight because I have a slight fever and a very sore throat. I was sick all last week with a cold or flu thing, brought on by the Methotrexate (stupid lowered immune system!), and I'm still recovering. It's not nearly as bad as it was three days ago, but it's still really upsetting. I can't risk getting mom sicker, so I need to stay home. I know that I can do the most here, but still... Grandpa needs dinner and laundry done, I have studying... I need to clean the kitchen and bathroom... All I want to do is cry though...

Mom isn't going to be home tonight, they still don't know what is causing the fever. Hopefully she'll be home tomorrow...

Can I please just get a break? People I don't really know keep telling me that God won't give me more than I can handle, but I don't think that's true. I'm breaking under all of this stress and worry ...

Confusion

Last Wednesday I had a doctor appointment... It was confirmed that I do have an autoimmune disorder. :( He said that I have a "diffuse connective tissue disease." He said that the methotrexate would not affect the fibromyalgia, which definitely points to an autoimmune disorder then. I haven't read up on it yet, I'm honestly scared. My doctor said that the methotrexate will keep it mild (hopefully) and keep it from becoming full-blown.

I'm honestly just scared. I knew something else was going on with my body, even if I didn't know what. Blah.

I keep meaning to write, but life has just completely overwhelmed me... This past month and a half has been sheer hell. I was in a 2 week bed-bound flare, then mom was admitted to the hospital for a week, and now my Great Aunt Helen has died. I didn't know her very well, but I only have pleasant memories about her. She was always very sweet. She would send us cards with the most beautiful handwriting, updating us on what has been happening... She died the other night. The funeral is on Thursday morning. I am honestly really nervous... My pain spikes whenever I am stressed, and I know tomorrow will be -major- stress...

My 2 week bed-bound flare was horrid. My mom was also sick, and I felt so guilty being unable to really help around the house or cook. I became really behind on my schoolwork, especially after mom's hospitalization. Mom was hospitalized due to some chemo complications... There was swelling near/in(?) her lungs, which made it hard for her to breathe. She is thankfully fine. It was a really hard week, the week she was in the hospital. I am terrified that something is going to happen and I would have to say goodbye... I don't know if I could handle that... It was hard enough seeing her so weak... I am crying just thinking about it. I love my mom so much, even though we do have our rough patches, and I just want her to heal and become better. She deserves so much, I wish she wasn't so sick... It's really hard on everyone, but I cannot imagine how hard it must be on her. I keep her in my thoughts and prayers all the time, and do my best to help her with whatever she needs, but I wish I could do more...

I have to keep taking breaks while typing because my hands are aching so much. The weather forecast is saying rain tomorrow, which explains how achy I am. On doctor visit days, I always seem to get migraines, tremors, and just overall worsened pain. It's very difficult for me to talk about how sick I have been, especially in front of my dad. I try and keep everything inside, not really telling my parents how hard it is to live like this... I don't tell anyone. I talk somewhat about it on Twitter and here, but that is the most I do. I try and journal, but I only become frustrated with myself. Even blogging becomes difficult, mostly because I look at what I am writing and become angry with myself. I notice how much I focus on myself, how many times I use the word 'I.' The doctor visits are the only time I talk about how hard it is and what is going on with my body. My dad already has enough on his plate, he doesn't need this stuff too... I think the anxiety from having to have my dad hear all of it is what sets me off the most. I loathe having my family see me like this. I want to be healthy and normal...

In better news, the methotrexate may have started working! I am really excited about this. The other day I had so much more energy and the pain wasn't as bad. Even now, it's not as bad as it could be (or usually would be). I'm doing my best to not place too much hope in it, but I can't help myself! The fact that the medicine may be starting to work has me extremely nervous though... What does it mean? Do I have an autoimmune disorder, did the tests give me false-negatives? What other treatments are in store? What autoimmune disorder do I have, if I have one? It's all so scary...