OKAY I QUIT, MAJOR VENT

(((((((((((((((Long, gentle hug)))))))))))))))))

I'm so sorry you're in such pain. I hope your leg feels better.
Rest well and try to take it easy.

 

Hi Barbara,

       I don't think that God is mad at you.  Life simply just does that sometimes and I don't know why.  There have been times when I have screamed at the Universe for being so unfair, which helped, because it gave me the space to vent.  I am really sorry that you are having so much pain.  It sounds excruciating.  I am wrapping up some sunshine from the Pacific Coast and sending it your way....as well as a very gentle, loving (((((((((((((Hug))))))))))))))).

Love, Laura

I just thought of something..... maybe God caused your foot to get hurt to scare off the fox. The fox sounded possibly rabid for it not to be scared of you. He does work in mysterious ways.

Hi Barb. I just wanted to add that yes, you are a very good person! You're good to everyone you know and I bet you are even good to strangers. You have a kind heart even if it doesn't work well physically. You deserve the very best! It's extremely unfair for your body to fall apart bit by bit. I'm certain God doesn't hate you, but I have no answer as to why you must suffer so much.                        

Please rest in bed and be open to receive the prayers and energy we send to you. You're often in my prayers. I love you Sweetie. Donna

Hi Lynn, Laura, David, Joy, twplowgirl, Donna, and Lynn:

You are all so good to me. Thank you so much for responding to my post and supporting me. I have had such a hard time lately. I feel so utterly alone and feel as if I'm not getting all the support that I truly need. So, it's always nice to know that I have family here at HW that support me and understand what I'm feeling.

David, I know you know what I'm going through with the QOL issues and feeling so frustrated that I'm not getting enough QOL time with my family. I just don't know what to do anymore. I just feel so dog gone bad all the time. My Rheumy truly believes it's more my leukemia that's making me feel so sickly. It's hard to accept that there's nothing my oncologist can really do for me. He's going to give me a blood transfusion on Friday so I know that will help give me some energy that I desperately need.

As for my ruptured tendons, haven't seen the surgeon yet. I will see the Dr on Friday morning and see what he recommends. I know the Dr I saw in the ER Saturday night was just a resident and his opinion may be different from the staff Dr's. If I can avoid surgery I will, but if letting my tendons heal on their own is going to take months on end, I'd rather take the chance with surgery.

My primary care Dr who handles my pain medications never checked her home email over the weekend. She didn't call me until 2pm on Monday afternoon. By that time my pain was so off the charts I never thought I'd be comfortable again. She allowed me to double my break through medications but reminded me that I will have to taper back down once I'm better.

Hubby, managed to give a shower tonight, he even managed to wash my hair. I'm so very thankful to him for that, I hadn't had a shower since Saturday morning. It's amazing what a shower will do for ones perspective on life LOL. Hubby will be home tomorrow as we are having some major repairs done to our house and there isn't anyway I can supervise the workers.

I've been able to get myself into my wheelchair everyday and push myself to the kitchen to get myself something to eat yesterday and today. It will be nice however, that hubby can do it for me tomorrow. He waits on me when he's home, but during the daytime I'm totally on my own. I even managed to make a bagel and eat it at the kitchen counter. It's harder trying to feed the cat, but he refuses to go to anyone else in the house. Plus, during the day it's me or nothing.

Well, that's about all the news here. Daughter goes back to college on Sunday, not sure if I'll be allowed to drive over with them or not. I know IF I do get to go, I won't be seeing her room, as it's on the 3rd floor and no way up there for me. Just have to wait and see what the surgeon has to say.

I want to say I'm sorry for getting so upset the other night with this thread. It just seems like every time I think I've turned the bend or got up the hill, I get shot right back down. It seems like I always have a black cloud following me and I never get a break. I KNOW that there are people out there who are worse off than me. I see young men at the military hospital everyday that are missing arms and legs and I know that's got to be so hard to deal with. However, I'm humane and I hurt too and I get frustrated as heck with my life and the illnesses that I have. I just want to be able to enjoy what time I have left of this earth and not spend it in pain all the time. So I thank each and everyone of you for supporting me and holding my hand along this journey that I'm traveling.

Hope you have a good rest of the week and I pray that you all have low pain days. I love you all and I'm so ever thankful to have you in my life.

Love,
Barbara

Barb, thanks for the update, I am always here for you. Enjoyed chatting with you earlier this evening, probably helped both of us.

david

Well I was up very early this morning to go to the Doctor. I had to be at the oncology clinic at 7:30 to get my port accessed and have them draw and type and cross for my blood transfusion. Once that was done, I went to my appointment at the Orthopedic Doctors office.

My Doctor came in with two medical students, one was from Saturday night in the ER. He asked them to remove my splint and come and get him once it was off. Well, the two young gentlemen had a heck of a time cutting it off. Good thing the scissors can't cut the patient, cause they kept hitting my skin. Finally, after about 10 minutes or so they got it off. They did an exam and went to get the Staff Doctor.

The staff Doctor can in and looked at me. I requested that if I was going to be in a cast for any length of time could he please make it a walking cast. Well, I was total NO WAY, that my toes needed to be pulled slightly towards the floor to allow the tendons to heal properly. He said I'm not a good surgical candidate and wouldn't have the tendons surgically repaired. He said I could be in a cast for 8 weeks and then a boot for another 6 weeks.

So for now, I have a lovely tie dye cast on my left foot. I will have to have the cast removed and checked in two weeks. The Doctor is worried that my skin is so thin from all my steroid use and I bruise so badly that he wants them to check my skin in two weeks. They will then put another cast on and I'll be seen again in two more weeks.

This Doctor is pretty familiar with me, as he helped repair my right foot two years ago. At least he knows that I'm sick and what my limitations are. I'm still frustrated as my daughter is leaving for college on Sunday and I'm not sure how I'm going to make it to my appointments. Hubby will try his best to help but it's gonna be hard either way.

Of course, once we got home I had a stupid accident. My daughter had fallen asleep in the chair in the family room, I was sitting on the couch. I wanted to come into my bedroom and lay down, so I tried to get myself into my wheelchair. Well, she didn't lock the chair when I got out of it and I didn't think about it being locked or not. I stood up and leaned over with my hands on the handles. My left foot slipped on the carpet, which then made me push the handles towards each other. The chair completely folded together, my right leg gave out and the chair and I fell to the floor.

The chair landed on me, I ended up with a major leg burn from my right knee to mid thigh. I cut my right knee and have a huge bruise there too. I pulled my right hamstring again and now I'm hurting right at the spot where my butt and leg attach. When hubby got home I was given a lovely lecture about safety and his peace of mind once she's gone back to school.

Of course, my fall did awaken her and she flew out of the chair worried. She picked me up off the floor and pushed me back to bed and I've not been out of my bed since. I'm so so frustrated, it's like things with my health are NEVER going to stop. It seems all I get is hit with problem after problem.

My Rheumy increased my MTX and the oncology nurse told me today that the extra 5mgs is a lot and I may experience sores in my mouth. Well guess what, I can't eat any food tonight, my mouth is killing me. The sores are all over my tongue and down the throat. Hubby has already come to bed and is asleep, and daughter is still knocked out in the chair. I'm guessing I won't be getting any ice cream for my mouth tonight that's usually what I use when my mouth is full of sores.

Will give you all an update later on in the weekend. I'm not sure if I'll be driving over to the college on Sunday or not. My daughter can move in on Sunday, but hubby really doesn't want me to make the trip. However, w/o us taking my jeep and his car full, she'll never get all her stuff over there.

Hope you all have a good weekend. I hope that you're not having any pain and if you're in pain that it lessens and you're able to have a good weekend. Thank you again for being us a wonderful support for me. I'm feeling very lonely and so frustrated. I truly don''t know how much more I can take. I'm ready to let go of the rope I've been holding tightly to. I just don't have much QOL and really this isn't a way to live. Please bear with me and my pity party's, it's just hard to stay positive.

Have a good night and a great weekend.

Hugs,
Barbara

First off we've got to find the person with the voodoo doll of you and take away all of their pins.

Ouch! I know that stinking chair bit you hard! Goodness Gracious!

You need to do what my BIL does to get help around the house. He wears his phone on a lanyard around his neck. When he needs help he calls my sister who works upstairs in a office to help him. He's paralysed on one side and is prone to falls.

It stinks you have to wear a cast for 8 weeks, but at least it's tie-dyed. ;))

Hey Laura, Joy, and Lynn:

Thanks for your support. Lynn thanks for wishing us well today. It was a long day but we were able to get her moved into her dorm. I of course, couldn't go up into the room Bill felt the stairs were to dangerous for me to attempt to climb.

She's in a really old dorm on the campus, I know that these dorms have old fireplaces cemented in. The school is one of the older ones in the nation so, if you have a dorm that use to have fireplaces for heat, you know the building is old LOL. My daughter seems happy with the room though.

Traffic was bad on the way over and back, but we were home by 6:30 so that's good. I'm doing alright tonight I guess, just really tired. I have an early morning appointment but at least I now know that I can get to the car on my own and drive myself to the hospital. Once I'm there and get into the front door, I can request patient escort to take me to my appointment in a wheelchair.

After my appointment tomorrow I'll come home and just rest I'm thinking. Hubby plans on fixing up the master bedroom for me so that I won't have to try to move around the house to much. He's planning on putting the chair from the living room in our bedroom and a small frig so that I'll have stuff to drink and such.

Hope you are all doing well. I'm hoping that you each had a good weekend and won't have to bad of a week ahead. Take care and I really appreciate it that you're all so supportive of me at this really difficult time for me.

Hugs,
Barbatra

Joy,

Yep, I'm enjoying my frig in my room. Hubby doesn't have things down pat yet but he's getting there. Tonight he didn't load it with food for tomorrow, will see what happens when he gets up. I know he's overwhelmed with everything. When I'm up on my own and can do for myself things seem to just naturally run smoother in the house LOL.

So far my week has been tough. I saw my GYN/ONCOLOGIST on Monday. He's been treating me for a condition for the past 10 weeks and things are just not going well. So he's decided that I'm going to require surgery after all Surgery date is Sept 25th and I'll stay overnight hopefully only one night. That's if all goes well and I'm cleared for surgery. Still need to see several of my specialist prior to my pre-op stuff being done.

Of course, with me in a cast I'm certainly not looking forward to having GYN surgery, but it's necessary and and has to be done ASAP. I go to my pulmonary doctor next Wednesday, to try to figure out what's growing in both my lungs. I'm actually very worried I've got some type of fungal infection in there. I have to say though, I'm going to refuse a scope of the lungs unless the totally put me under with general anesthesia. I just can't anymore invasive procedure that hurt and feel terrible.

I'm managing alright on my own here at home, but I'm hoping that tomorrow when hubby gets home, I can talk him into helping me get a shower/bath somehow. Just wiping off with a sink of water isn't the same Thinking about purchasing some cast covers I found on the internet to allow me to shower. They say you can swim with them too, the reviews I've read have been good. Has anyone tried these?

Well that's mostly my update here. Daughter is now gone off to school and it's back to us old folks in the house LOL. Hard to believe that September 1 is just at the end of the week. Summer sure did fly by. Hope everyone has a good rest of the week. Take care and may you have low pain days.

Hugs,
Barbara