This Holiday Season has actual been somewhat peaceful, I guess because I haven’t had any expectations whatsoever – either me of anyone else and vice versa. I suppose it would be better the other way around; it would mean I was experiencing life rather than just existing. That is what I’m doing, I fear: existing and waiting to die. This is my choice, it’s no one else’s fault, that is for sure. I need to spunk up. I’m not depressed although it may sound like I am. I have wonderful family and friends. I feel loved, that is for sure. I’m just tired, tired of it, and sore.
The previous entry was written, I think, December 4th. I still am not all that familiar with this site and must have saved it in Drafts and did not hit the “Publish” button you have to punch in order for your entry to Post. While the previous entry is outdated, I didn’t want to delete it.
My doctor suggested I go to Physical Therapy (PT). I had my first appointment last week and must say I was a bit disappointed. The PT office in KU is in the basement in a crowded, dingy office. The waiting room is crowded as well as the PT working area. Surely this is not KU’s PT area? It must be some outcast area. I will surely ask the doctor about it when I see him this Friday. I hate to sound negative, but I can’t think of anything positive about the place. If felt crowded, musty, and dirty and somewhat unprofessional. The nurse that worked with me was nice, though I didn’t feel she was very professional. First, the waiting area is so crowded, even if you were fit and could get around. The space is small and chairs are lined up along the wall and in the center of the room. The lady before me was wheeled in in this mammoth side wheelchair. She was dropped off at the check-in window. I helped her move the wheel chair. There was no where to move it. I just placed it next to the wall but you could barely walk around it. I think a nurse later put it in the hall. This lady could hardly get around and had some other walker with her. She was really immobile.
Once they called me in, I could not believe the cramped quarters of the area. I passed by an area with exercise equipment all cramped together. I can’t explain the place in order to give you the visual; just trust me it is crowded and dingy.
The nurse brought me to a ‘room’ (separated by curtains I think). It was very small with a hard bed on wheels and a sheet over it. She had me do a few exercise a few times and that was it. She kept looking at her watch because the appointment is for 45 minutes and by golly…that is it. She had me lay on the bed at one time with my feet up. When I left I noticed some dirt on the white sheets where my feet had been. For some reason I was left wondering whether they’ll put new/clean sheets on that bed for the next person. I am having doubts about that for some reason.
I feel bad for saying this, but the nurse was very overweight, borderline obese. I just didn’t expect that from a PT nurse. On my way out she had me make two more appointments and the nurse she had make them was even more obese than her. The lady working at the front desk was very unfriendly, also obese, and had about 1-inch fingernails with deco on them. I chit-chatted with the nurse working with me because that’s what I always do. I am sure I appeared much more friendly than I was feeling, because you have to maintain a relationship with those treating you. The nurse was nice but very rough around the edges. I dreading future PT treatments.
I suppose the important thing is that I gain knowledge. I just need to know exercises to do to regain strength – wherever I need it. She said I need it in my butt as well as in my quads–left side particularly. I haven’t been practicing these exercises as I should. She was not very instructive about this, by the way. She was having me do exercises and I thought she was just assessing me. Until we were done I didn’t realize that she was probably having me do some of the exercises I should be practicing at home. I had to ask should I be doing these exercises at home and she said “yes.” But I would have expected her to tell me how much I should be doing them as she was having me do them there-at the time so that I would be memorizing the routine. It didn’t dawn on me at first, so I was not memorizing the exercises; I thought she was purely assessing me. Oh well…..
I do believe I’ll ask the doctor about a “closer” PT place. I’ll finish this place out…maybe. I don’t want to slam this place, but it is nothing like I imagined a PT place. I keep wondering if it is some outcast place. Surely there is a more professional PT place than this??? KU (Kansas University) is supposed to be a very good hospital. I don’t get this.
My main physical symptoms are fatigue and bone and joint pain. I don’t get the pain so much because my bone marrow cancer is only 2% (which is good). My pain is most likely just from damage done from the Thalidomide and Revlimid and Dexamethasone (steroid). Unfortunately most of it is permanent. I don’t know how much if any can be reversed.
In my mind I know I need to juice more and perhaps take more supplements. I’m iffy about supplements in that I’ve read where it’s not natural to take so many supplements. I can’t say I noticed any improvement from the Osteo-Bioflex. I’ve tried those fancy vitamins people suggested (and sale, of course) — no difference. The only time I did notice any diffrence in supplements was when I was taking the B-vitamins at the beginning plus some of the minerals and supplements for neuropathy (i.e. alpha lipoic, acetal L-carnitine, etc.) Since I’ve been so exhausted and somewhat nausaus and not eating a lot, I’ve been lax on taking these things.
What can I say? It’s just too much trouble to try to do this healthy stuff. I think that’s why I just exist. It’s too much a pain to try to improve and get well. Eack. I’m just venting in a sort. I don’t just give up on trying to improve my nutrition, though it sounds that way to the naked ear and eye. This is my way of confessing my sins and then trying to improve my habits.
My hands always hurt, 24/7. Sometimes they feel like they are swelling up with fluid even. They get hard to bend. In the mornings they are hard to bend and boy do they hurt. My main sore spots on my hands are at the base of my thumbs. And I mean, they hurt. It makes me feel irritable even it hurts so bad. I need to drug up over it, I think, instead of just living with the pain. Yesterday I took some break through Oxycodone. I might try aspirin and if it doesn’t bring relief, I’ll go to the big stuff. My toes will even get that puffy feeling sometimes but they don’t hurt as bad as my fingers. I think that stupid lenalidomide (sp?) is what has done this type of damage along with the chemo medicine – mephalon. Ever since my SCT my joints have ached. If my cancer is low…well then it’s the medicine that has damaged me. Wonder if I should’ve just let the cancer get me? What a pain in the arse…
I’m still enjoying my life, though. The kids and family and precious friends. I have so much to read while I can. Think I’ll go juice something, take some supplements and vitamins maybe, and either read or watch my Dog Whisperer recorded shows. I just love Cesar!