Another terrible,horrible, no good, very bad day

Nobody likes Mondays. Mondays signal the end of weekend freedom. Mondays mean a return to the grind for those who remain enslaved in the workforce, but even for those who no longer do the typical 9 to 5 routine, Mondays aren't anything to look forward to...most people I know dread Mondays. I'm one of those Monday haters and let me tell you why.

This morning, when I woke up, I knew I had an appointment for physical therapy on my spine. For the past 2 weeks, I've been enduring challenging treatments to help remedy severe spinal pain. The first few treatments were difficult but as treatment continued, I decided enough was enough. I was tired of going in with my back hurting and coming home with it hurting even more than it did before I saw the therapist. I wasn't looking forward to my appointment and wanted desperately to call in and cancel it.

I got dressed and made myself go to the appointment. I knew Dr. K, my orthopedic spine specialist, had scheduled these therapy sessions to help me and I was determined to follow through with his plan of action. As much as I didn't want to, I got in the car and drove to the rehab center. When I arrived, I was taken back to the treatment area, asked to disrobe and lie on a therapy table. One of the assistants came over with a very large heating pad and placed it on my back. I lay there for 20 minutes before Russ came over to work on me. When he began the deep tissue massage, I realized how tight some of my muscles were. As he dug in deeper, I winced in pain but he continued. Next he used some kind of spinal manipulation tool to separate the vertebrae into the proper positions. It felt like a large metal file of some sort that he was pressing and sliding across my spine. It did NOT feel good and I told him so. I'd thought I was going to get the electronic stimulation next but he decided I needed to do a different type of therapy today. I was placed on top of a large foam roller and had to do various stretching exercises while the hard foam semi circle dug into my back. I did everything Russ (my therapist) asked me to do. I was thankful therapy was only 45 minutes today instead of an hour. As I got into my car, I bawled. What a great way to start the day...but wait, it gets even better.

My new lymphedema pump

When I got home, I noticed a large brown box on my front porch. When I went to open the box, I found the new compression pump and compression sleeves for my lymphedema treatment. For the past 2 months, I've been waiting for this unit to arrive. I've been fighting with my insurance company to get them to approve the equipment ordered by my oncologist but instead of giving me the specific unit he wanted me to have, they substituted another less powerful machine. They said the one my doc wants me to have isn't medically necessary but the representative from Tactile Medical (the company that makes these lymphedema treatment machines) told me they usually balk at first but give in after the patient tries the less powerful machine without good results. In a nutshell, I have to use this machine and document how it doesn't help me in order to get the original machine my oncologist ordered...doesn't make sense to me, but you have to play their games, I guess.

My cell phone rang as I was unboxing the equipment. It was my oldest daughter. She was calling to tell me about her weekend. As we talked, I got the compressor hooked up and finagled the compression sleeves onto my arms. I figured while we talked, I could have my one hour treatment and kill two birds with one stone. This was the first time using the equipment alone. The last two times I'd tried it, the rep had been with me and had shown me exactly what to do. She stayed with me during the entire treatment.

The hookup looked fairly simple according to the diagram. I unzipped the right compression sleeve and lay it on the sofa then unzipped the left one and lay it alongside the first sleeve. Then I connected the hoses to the compression pump. I continued talking with my daughter while I plugged it in and slipped the first sleeve onto my arm and zipped it up. Next I tried to put the second sleeve on and found it quite difficult since I already had one sleeve on my arm and had no free hand or fingers to zip up the zipper. I had to think for a minute and finally bent over and used my teeth to pull up the second zipper. So far, so good. As I listened to my daughter tell me about my youngest grandson cutting his two year molars, I switched on the pump and sat down on the sofa to enjoy a quiet, pumping massage to both of my arms.

Me in the compression sleeves

As the machine began to inflate the sleeves, they became quite tight and restrictive. Having both arms outstretched was uncomfortable. By scooting my outstretched arm over the sofa pillow and alongside it, I managed to move a cushion under one arm and then do the same for the next arm. Now I was all set and ready to let the pump do its thing. I was supposed to have an hour of treatment according to my doctor. I sat back with my elevated puffy arms and let the machine work. The compression pump was extremely quiet. I was thankful as Erin and I continued talking. Somehow, during our conversation, the call dropped and when she called back in, I wasn't able to answer because I couldn't move my arms. I couldn't get them out of the sleeves! What to do??? I managed to straddle the long hoses connecting the sleeves to the pump while staying attached to the machine and bend over just enough to use the tip of my nose to press on the green answer button on my Iphone. I wasn't able to hold the phone and I couldn't hear her talking so I spoke loudly asking her to wait a second while I used my nose once again to switch on the speaker button. When I had her where I could finally hear her, I told her what I'd just had to do. Although it sounded hilarious to her, it was a difficult challenge. I sat back down on the sofa to continue my compression therapy and pick up on the conversation where we'd left off.

After about thirty minutes, my arms were feeling very uncomfortable and I wanted to get out of the sleeves and turn off the machine. As I looked down at my arms I had no idea how I was going to manage. There were large fabric loops attached the zippers on both sleeves but I had no free fingers or hands to grasp the loops because both hands were encased in the compression sleeves. I tried bending my head at an angle to grasp the loop with my teeth, which I managed to do, but was unable to pull the zipper down toward my hand. Just knowing I couldn't remove the sleeves seemed to intensify the level of compression and I began to go into panic mode. My daughter could tell by my voice I was starting to freak out a bit. She told me to calm down and try to think what I could do to get out of the sleeves. Since she was 1700 miles away, she could do nothing to help other than try to calm me down and offer suggestions. When the anxiety began to escalate, I heard her call her little ones together to come pray with her. I listened as they softly asked God "to help Gigi figure out a way to get out of the compression sleeves."

I wiggled and twisted my body trying to find some way to be set free but nothing worked. After about 15 minutes, I told my daughter (who'd been so kind to stay on the phone with me the entire time) she needed to call my other daughter, Laura, and ask her to drive over and help me. (Laura lives about 45 minutes away so even if she'd been the one coming to my rescue, I'd have had to wait a good while before I was able to be out of the sleeves.) Erin told me she was going to call Laura and call me back. I asked her not to hang up because I didn't know if I could answer the phone again with my nose. She said okay and put me on hold as she called her sister and told her of my plight. A few minutes later, Erin came back on the phone and said Laura was in a neighboring town shopping. She wasn't going to be able to help me. I was feeling very helpless and then, to make matters worse, my nose started to itch! Have you ever had an itch you can't scratch? Well, it isn't a good feeling! I tried thinking about something else but it didn't work. My nose kept on itching and wasn't getting better. I leaned over from the waist and rubbed my nose on the compressor box. Ahhh...finally some relief! Now my nose was feeling better but the rest of me was still in a tight (pun intended) situation.

Entering total freak out mode and feeling like I was in a straight jacket, I put one arm between my legs and tried to pull. The compression on the sleeve was so tight it wasn't going to budge unless I could manage to squeeze some of the air out of that sleeve and manage to slide it off. I used my thighs to squeeze as tight as I could. As I squeezed on my right arm, my left arm inflated even more. (The air was transferring between the two sleeves.) And to make matters worse, the pump kept filling and refilling every few minutes as it was supposed to do with the compression therapy. Then it dawned on me...if I could manage to unplug the machine, it might stop inflating. Still, I had no hands free so I had to kick the pump off the coffee table and using my toes, unplug the adapter cord from the back of the compressor unit. After several attempts, I managed to unplug it. No longer was the pump forcing more air into the sleeves, thank God!

I stood up and put my right arm between my legs again and squeezed with all my might. As I continued squeezing, I tried to force the sleeve down my arm. It took 4 attempts before I was able to feel a tiny give in the compression sleeve and as soon as I felt that little bit of wiggle room, I was intent on getting that sleeve off! Erin kept talking to me the entire time and helped keep me calm. After all that struggle, I finally got one arm free and then was able to get the other free too.

I've never felt so happy in all my life! Getting out of those tight compression sleeves was a miracle! If there'd been a hidden camera recording the entire situation, I'm sure it would have made the top 10 of America's funniest home videos. While it is funny to think about now, it was the furthest thing from  being funny at the time.

Tonight I'm going to write the company and suggest they place warning label on the compression unit encouraging patients to make sure they are not alone when attempting to use both sleeves at the same time. I'd hate for someone else to go through what I went through today. So now you can understand why I don't like Mondays very much. Especially ones that end up like this one did - a terrible, horrible, no good, very bad day.

© bonnie annis all rights reserved

The naked truth

Naked chest and compression sleeve

Today I feel bold. For some reason, I just feel like baring it all. Maybe that's a good thing and maybe that's a bad thing but in any event, this is my blog and I can do whatever I choose here...it's my space! So, if you're offended by my photo, I'm sorry you feel that way. I'm not sorry you looked because the reason behind my posting it is to let you see what breast cancer really looks like...and this is the mild version! If you'd seen my chest last year, you would have probably been devastated by the ugliness of it. But after 23 months, my scars have almost completely healed. One area is still pretty reddish looking because of a second surgery to remove some necrotic tissue but the original incision has all but faded away. My incisions travel horizontally across my chest and just above them is my Phoenix tattoo. Yes! I have a tattoo. It is symbolic to me and symbolizes rising above the pain and trauma of breast cancer to be a victor. I'm still alive and doing fairly well. I do have daily challenges but I am fighting through them.

The beautiful sleeves I'm wearing are not only decorative, they're medical grade compression sleeves that help combat Lymphedema. I wear them to keep swelling down and alleviate some of the pain. If you look closely, you can see the swelling in my upper arms. I'm really embarrassed by it but am sharing it so you can get a clear visual of what I really look like without a top on. I've tried to be open and honest about everything on my journey in hopes of helping others.

Although my body has been mutilated and scarred, I am so thankful to be living and that's why I have a smile on my face. I pray you NEVER, EVER suffer from breast cancer. It's been the hardest thing I've dealt with in my life to date but God is good and He is faithful. And that's the naked truth!

© bonnie annis all rights reserved

What a day it's been! I just got home and I'm bushed. Today was my first day back to Lymphedema therapy in a little over a year. It's amazing how much things can change in a year. When I walked into their office everything looked so different. They'd remodeled so much I wasn't sure I was even in the right place and felt like I was having a senior moment! After filling out paperwork to update my file, I was taken back to the treatment area. My old therapist, Allison, had been replaced by a woman named Lisa. Lisa seemed competent and a little brusque at first, but she warmed up after we talked a little.

Cold Laser Therapy Machine

It was freezing in the therapy room as Lisa asked me to remove my blouse and let her see my scars. She didn't say anything but I could tell what she was thinking. After looking with pity at my chest for a few minutes, she asked me to lie down on the exam table. She turned to put on some soft music and dimmed the lights (I know, it's kind of freaky but they just want you to relax.) I asked Lisa if many of her patients fall asleep while they're having treatment and she said most of them do. I don't know how any of them could get comfortable enough to sleep, it was like a freezer in that room! I was shivering as Lisa donned her rubber gloves and brought the bottle of lotion over near me. She pulled up a rolling stool and warmed the lotion in her hands before applying it to my upper arms. After the lotion was in place, she began to gently massage my upper arms and chest area. As she worked on my right chest area, she was pressing a little too firmly and I had to tell her to stop. I was surprised at how tender I was in certain areas because most of the nerve endings in my chest wall are complete numb. She apologized and worked with lighter pressure working at my upper arms and along my ribcage. She asked if I'd ever had cold laser therapy and I told her no. I'd never even heard of it. She explained it's fairly new but is supposed to help break up scar tissue and penetrate deeply into the lymphatic system. She said I wouldn't feel a thing as she began the treatment and I didn't. I wondered how something you couldn't feel could do anything worthwhile but she assured me it would. Lisa continued to work on me for about 45 minutes and when she was done, I felt more relaxed and had less swelling in my upper arms. I was thankful! We went over my schedule for the next several visits and I left to go by the Orthotics and Prosthetics company, C. H. Martin. It was time for me to have my annual remeasuring and fitting for lymphedema compression sleeves.

At C.H. Martin, I was amazed that they'd changed their office too. One year makes a huge difference when it comes to change and I couldn't get over everything that has transpired since I was last here. For me, life has seemed to stand still but for everyone else, change and growth has occurred. As I sat in the waiting room, I heard the receptionist verifying my benefits. She talked so loudly and I was glad there were no other patients in the room who might overhear my personal information. She needed to be trained to respect the privacy of others, especially since she works in a medical office. I sat and waited about thirty minutes and finally was called back for my appointment.

Lymphediva compression sleeve

Sara, the fitter, was pleasantly surprised to see me. I was shocked she remembered me, but enjoyed talking and catching up with her for a little bit before we got down to business. Sara pulled my file and took measurements of both arms from wrist to shoulder. As she jotted notes in my file, she asked if I'd already picked out the patterns for the sleeves I wanted. I told her I had looked at some on the Lymphedivas website but I liked the grips better on the Juzo sleeves. The only thing I didn't like was Lymphedivas had so many more pretty patterns and Juzo had just started adding patterns to their line. If I wanted to get the best sleeves, I'd get Juzo. If I wanted the prettiest sleeves, I'd get Lymphedivas. I opted for the Juzo sleeves just because they stay up better on my arms and I don't have to constantly fight with the sleeves rolling down on me. Sara gave me a catalog so I could see the new patterns in Juzo and make my selections. Our insurance had changed since the last time I was in and I could only get 4 pair of sleeves now instead of 8. Each sleeve costs $90 so even at only 4 pair, that's a big chunk of change. I finished up with Sara about 3:30 p.m. and was ready to get some lunch and get home.

On the way home, I prayed for my appeal for the recirculating compression pump to be approved by our insurance company. If they will approve it, I can have treatments at home instead of having to drive 2 hours every other day to the treatment center and it would help so much. I guess I'll just have to keep praying and waiting. My oncologist and my breast surgeon have submitted paperwork to substantiate the claim for the pump. Now it's just a waiting game. It seems so unfair that insurance companies get to dictate what is and what is not medically necessary for their insured. I know I'm not the only one who has to deal with this type of problem but what a racket! We pay our premiums and expect to get what we pay for....the best care at the lowest cost. Since Obamacare went into effect, it's caused so many insurance companies to rethink what they will and won't pay. For someone with long term health issues this creates big problems but I guess we don't have much say in our healthcare any longer now do we? I'm thankful for the Lymphedema therapy and for the compression sleeves that help combat my daily swelling. It's amazing how Lymphedema seems to bother me much more than having my breasts removed.

I'm on a quest now to find women's blouses with looser arms so I can still look stylish but also have clothing that fits without looking sloppy. There aren't many specialty shops that cater to people suffering from Lymphedema. I may just have to start making my own tops soon. And that's all I have to report today. Life is good albeit challenging learning how to manage fatigue, insomnia, and swollen arms. I'm just so happy to still be alive!

© bonnie annis all rights reserved