And I mean the kind of things that are on PowerPoints or you know list those kind of things oh the word finding problems I have! Anyway I've missed everybody and mostly missed the days when this group was my daily meal. But maybe I can try to explain my last year.
* NOV I did the spinal trial and surgery was planned for April for perm electrode
*Then after Christmas I had Cellulitis over amd over for months
*They said I have kidney disease amd heart failure disease due to having high blood pressure and diabetes formally diagnosed at 20 so now I'm 55 so after 35 years most of my organs and stuff have been worn down and or not exactly anything to hand down which is why I decided to donate my body to science rather than to be a formal donor. I figured that science could use a whole body every now and then. So I did the paperwork for that and got that all situated. And then got down to the mean business of surviving because I wasn't ready to donate anything yet.
* so then in the summer the cellulitis stuff finally stopped because I met this wonderful wound care doctor in a bariatric wound care center at a large teaching Medical Hospital and he put me on a compression therapy. I wear something called a circaid juxta lite compression garment. It's just a rap with velcro to keep my legs compressed all day. I wear it under my clothes I'm used to it and it keeps my leg swelling down. I couldn't wear the stockings they would hurt and I would take them off scream bloody murder about it so this works nice I can make an adjustment here and there on it. But then the next thing he did was get me hooked up to a pump which makes my lymphedema system back up into the circulatory system like it's supposed to and all I have to do is zip on these blue boots that look something like an astronaut suit and air is in there and it massages the leg there's nothing more wonderful than my time spent in these. I try to use them as much as I can. All of that has been working very well for me and I have not had a cellulitis since I've been doing this. I also volunteered for a study with the Dermatology Department so they can watch what happens with me.
* I know all of that sitting around just made it awful for my vestibular system that needs me standing up in exercising. So I went back to physical therapy. But you know how that is they only authorized six meetings and then it takes 12 more weeks to get six more meetings. But I plan to stay and physical therapy until I feel that I gained my ground again. That means doing my homework which is some of my exercises and strengthening my legs however every time I get a sinus infection and even though I've had my flu shot pneumonia shot will I still get these awful sinus problems and I'm on a number of allergy treatments.
**I went in and found out that I do not have asthma and I do not have COPD! hooray hooray hooray! But sometimes I get short of breath. They tell me that I have pulmonary hypertension. Like I needed another formal diagnosis after my name. Does the person with the most win? Well I seem to be working towards it! But now I can honestly say that I don't have to be long to that study group which I had volunteered to be in and it turns out I don't have it after all so I still have my Amazon purchases going to that worthy support group to study because my friend has it. She has had asthma all her life and now she has COPD yet she has never smoked. So anyway they just said that I had it just as a way to waive their hand at me to go away and just listed as that but when I went and was tested formally in the booth they found that my lungs just don't breathe in at capacity. No other explanation. And so far no other explanation is coming. So I'm hoping that by exercising a little more that it will help me.
I'm now going around in a wheelchair because they told me to be careful not to get another blister so I've been really careful because the last two pair of shoes have giving me blisters. I will be getting a brand new Walker because the one I have the brakes are not working good and the pouch is ripped I really put it through the ringer but I am really careful now about my feet. When I had to have an MRI 2 find out if the infection in my heel went to the Bone well that was a wake-up call but all was well! Again I escaped the bullet! So this week I'm going to pick up a new pair of shoes they're double depth. Fingers crossed!
** this month I'm going to order new glasses frames for my new prescription. My vision has been affected by the stroke. I have strabismus and nystagmus but it's mild and it's stable. But on any given day it acts up and I would say that it's moderate not severe but certainly not mild. The double vision comes and goes depending on where I'm at and who I am at the time I guess. So so I can color because I use one eye and I get very close to the paper and I can read my phone and I think now I can even use both my eyes together but not very often but over the past five years it's gotten a bit better the colors are better now at first they were all wrong try explaining that one.
* last year my mammogram had two spots on it that were suspicious and they told me this and I burst into tears. I apologized and blamed it on the stroke saying that the slightest thing can just make me lose my dignity please forgive me. The women came around me almost in a huddle almost shielding me and I said oh no this is big news that often is responded to with an emotional outburst and do not feel ashamed. But they told me I needed to come in in a few days so that I could get this looked into as quickly as possible. I was at a Cancer Center that is world renowned and so I knew I was in good hands. And my news at Christmas time was that the one spot had been some sort of shadowy thing nothing to even test and the other spot was tagged and biopsied and was a harmless thing that is Tagged so that it won't be bothered next time. So now it's next time and I think I may be braver I know that when I get the news that something's wrong it will always be a sting because of course why would it not. But I will always have the courage to go in annually.
** so this year I did some things for myself color coloring is my hobby. I just got into it and I just never stopped. Now I have people asking me two color things out of the many books I have with perforated pages. Surprisingly and humbly I tell you that they have been framed pictures we're giving to me saying here's a photo of your picture. It brings tears to my eyes. One lady put a couple of my pictures in a collage with the Beautiful calligraphy Bible verse. Anyway it makes me happy and hopefully it makes them feel loved. What do people like they like my peacocks. And they like my fairies. Now I have a couple of books that I color just for me and those are like in my collection. I was a peacock for Halloween ! And if I do say so myself I took third place ! Not bad for just a feather in my hair and a scarf and a fabulous fan !! But now I've told you my secret ! But I don't have too much time to do this because my real hobby is
Oh you just can't believe that yes my son and I play this game he even bought me a new game system for my birthday this year along with the cutest little plush. I find that distractions is the key to my pain management and for my mental health finding just plain old-fashioned silliness fun is the best medicine for me!
** I do have been trying to get some kind of reclining chair to elevate my feet but so far it's an insurance thing! They still look at me like I am the person that should be opening the door and just pop and down the stairs and jumping into a cab and going off to meet a friend for dinner. But I still have the same old stroke deficits that pop up every time I have an infection. I feel this week because I had been ill I had been complaining but no one was listening because my temperature was normal. But then my temperature was not normal and as I walk to the bathroom with someone beside me all of a sudden my leg gave out and I went down on my knees. She was holding the gate belt otherwise I know that I would have smacked my head. I am extremely careful when I don't feel well and I insist on precautions. Maybe that makes me a squeaky wheel but when I don't that's when stuff happens. Anyway they were able to call in antibiotics immediately with no other problems and I am very grateful for that so now today I was able to polish my own Nails my shakiness is down and I think that I'll be able to walk on my own without having to use my wheelchair.
The good eggs in with the bad. I have had many blessings this year and many frustrations. Thankfully frustrations have a short fuse and I don't remember them for long. One thing that happened this year is that my daughter called me. Finally. As many of you had read my daughter had disappeared and I was never quite sure why yet I understand completely. good eggs in with the bad. I have had many blessings this year and many frustrations. thankfully frustrations have a short fuse and I don't remember them for long. one thing that happened this year is that my daughter called me. Finally. As many of you had red my daughter had disappeared and I was never quite sure why yet I understand completely. there's a lot of pressure for a daughter to be a mother's caretaker. I'm glad that my daughter went out into the world and made a life for herself. I would not have wanted it any other way. I am grateful for the time that she spent assisting me in the beginning and that great transition. And I think that she has grown up a little bit more now and hopefully understands a little bit more now that she herself is a mother. And yet there is still a distance now. It's like you can never really gain back lost time and things with people seem to just change or is it just me?
My son and I are at constant. So it's not always 100% good and Lord knows we've had our problems but he's always there for me and I appreciate it. And I have appreciated it when he's honestly told me that he can't be there for me. And I want him do you know how proud I am of him 2 I'm glad he has an outside life of course. In fact I am so proud that he has traveled around the world in his work and his his research with cancer.
But honestly what I wouldn't give to turn back the clock I could just make a laundry list of things I miss because my kids grew up. McDonald's at any age I miss so very much. So it's so funny because when my son and I get together the first thing we do is go get a McDonald's! It's like a tradition! We always travel with a large soda tucked away in the dashboard. And we are now playing this video game stuff together and I must say that that has drawn us closer. I wish that I had spent more time when he was younger but it seem like I took him to stuff but I didn't participate oh I was working and I was doing this and that and the other. Can't do everything but anyway it's still fun to get out and do what I can and be who I am today. I still try to do what I can like put on some makeup and some nail polish. It's so funny how some people will say oh I've never seen you with makeup on and I'm thinking wow has it been that long that I could possibly meet somebody and know them for. Of time and they not know that I love to wear makeup. And then other people will say oh I've never seen you wear nail polish and then I'm thinking wow now that's just plain crazy because I wear nail polish all the time but again they don't see me off and maybe. So the one funny thing is that honest here I have not had a haircut in one year let me figure this out 1 year and 6 months. Now I've put all kinds of conditioning stuff and all kinds of grow your hair back stuff trying to get some hair and I just decided that cutting it was just getting it shorter and shorter it was okay but I miss my really long hair so now my hair is back but it falls out like crazy and it's okay I don't know it's just long and it got long it seems like where did the time go and then I see how long my hair is and I'm like oh yeah it has been another Longyear so I'm not sure what I'm going to do next. I think I just I want to grow it longer and longer and see what happens. I think it's kind of neat to have long hair so I also know of a place that will not charge me too much more to color it so maybe I'll even color it. So far I've just let the gray come in I just stopped worrying about it because I had other stuff to worry about and the gray came in and I thought I can't keep up with it I can't keep chasing it. Besides I'm not really interested in looking younger or younger sake I was before I think I just didn't want that gray hair to show just wanted to do something different I always had it short. Go back to my early 20 days when I had hair to my waist.
One of the things that I couldn't do was get the spinals for my pain relief and I was taking pain medicine every 4 hours which is making me fall asleep and so now I'm taking it every 6 hours I still fall asleep a lot but it's not so bad but I'm just wondering what's going to happen because I'm not going to be able to do the surgery until I get really over all of these infections and to tell you the truth I do remember how much it helped but I always get cold feet again over and over. Saying surgery makes me feel sick to my stomach.
I would say that I'm afraid of the pain of surgery! But of course that's ludicrous when you have this pain syndrome it's already ruining every conscious moment and taking away so much of a life that could be lived. So I think I'm going to have to be brave braver than I usually am no braver than I always am. I'm just learn how to do this. But today I'm just remembering about stroke stuff and there's a reason for that.
Somebody today told me and I've known her for quite a while and she told me that she had 2 t i a s and I listen to her story and I asked her what was she doing today did she have a neurologist and did she keep a regular doctors appointments and I wanted to tell her that there's no such thing as a mini stroke and there's no such thing as just a circulation problem. I wanted her to realize that maybe something needs to be looked at and maybe she should go but I didn't want her to be alarmed I just wanted to go see a doctor. And I said because things happen. And I know that people don't take it seriously unless there's paralysis. Anyway I see told me what some of her problems are there similar to mine and I told her about support group and how valuable it's been and I asked her about had you been online looking for info blah blah blah. All I wanted her to hear was go to your doctor.
And thank you sue for always sending me a little note sending me a little hope in a little love. And now I'm going to sit back and read some of your blogs and have a visit with you all because I've missed you and I've wondered about you and I've needed you and yet you know how it is but it is so nice to feel like I can come back and sit around the Round Table and have a chat again