Cindy’s Multiple Myeloma Blog

My feet always burn. The last 48 hours I’ve had more difficult moments with them. This isn’t new, to have moments not so bad and then some moments quite bad. I’ve at least come to know that when I’m in the midst of a “quite bad” moment, that the “not so bad” moment is around the corner. At least that’s how it’s been so far.

I made it to PT today by myself, nobody driving Miss Daisy (me). I was walking more stiffly and unbalanced. Woody noticed. I asked him about my feet. I’ve realized that not only do my ankles swell, but my feet swell and my calves are a bit puffy. It seems the lower it gets, the more the puffiness. But, my toes don’t seem to be puffy, else I imagine they’d look like little piglets.

So I asked Woody, my physical therapist, what the swelling consists of and where is it pooling exactly. His answer made sense, but I know I can’t relay it clearly or totally accurately. I’m going to make an attempt, however.

And let me clear something else up before I attempt to repeat what Woody said. I always describe my toes and feet as numb. It is confusing though, because I FEEL everything. As a matter of fact they are very sensitive. If I step on one tiny granule of kitty litter, it hurts very much. Before whatever is going on with my feet occurred, I’d probably barely have felt a granule…NOW it is quite uncomfortable. So, I’ve realized my feet aren’t so much numb as they are maybe having different sensations. I’ve realized that I’m retaining FLUID in my skin or something, and this fluid is irritating my nerves or nerve endings…and THAT is the pain and funky feeling I’m experiencing. I describe it as feeling like my feet are immersed in dry ice.

Woody explained that our bodies have two kinds of *I don’t recall what word he used, but maybe* “muscles” or “controls.” One is voluntary and one is autonic (?). I’m not sure of the word for the involuntary one, I just know it starts with “auto” and ends with “ic”. [I'm going to have to have this explained again.] Anyway, voluntary functions would be like lifting your arm, spitting, things you have CONTROL over. Then the other one, I’ll just call it “autonic” for now, but that is NOT the term, it would be your heart beating, food going through your digestive system, blood pumping throughout your body, and so on: you don’t control it, your body just does it automatically. That is, if everything is functioning normally.

My spinal cord damage, where it’s atrophying from the T8 down is causing some of my autonic functions to not worky properly. That’s probably why I have difficulty having bowel movements. Same with why I have to self-catheter.

I was wondering why I have this fluid and where was it coming from. Woody explained that our blood is pumped, via pressure, from our heart, it goes through capilaries which expell nutrients to our body cells, then it moves on through our veins and back to the heart – just to start all over again. I think I have that in concept correctly. Perhaps MINE, when the blood comes after the capilaries, doesn’t have enough pressure and does not function properly, so there’s pooling of fluid. This is where I’m a little foggy; I don’t know where or what the fluid is exactly. I just understood it to be that the return trip perhaps is where the dilemma is. This pooling of fluid, therefore, is causing swelling and irritating my nerves.

I know I’m not understanding it completely; I’m not using the correct terminology. But I think I have the concept down at least a little bit.

Woody suggested I try to elevate my legs at least a couple of times a day to help relieve the pressure from the swelling. I usually am sitting down, so my legs and feet are lowered and they swell. They’re betting in the morning, but there’s still a little swelling evident. I’ve even put pillows under my feet and a little swelling still remains.

The only time I saw the swelling leave nearly completely was when I was sick with a migraine in bed for nearly 3 days straight. The laying in bed helped but what really helped is that I was not drinking any liquids. I sipped on 12 ounces of 7-up over 2-1/2 days. So I was dehydrated and the swelling went down. I guess I can’t go that far to relieve the swelling!

Anyway, it makes more sense to me now, but it doesn’t help relieve the pain or the swelling. Woody gave me some spare TED socks. He said they may put enough pressure on my ankles and legs to move the fluid on through my system. I washed them and they’re hang drying. I’ll give them a try as soon as I can. They’re long socks, hose like really. They’ve got elastic on the end. They look like they should come way up my thighs. They’re white and ugly, but no one will see them. We’ll see. It may be an adventure. You can be sure I will blog about it! I tell everything!

All-in-all, I did pretty well at PT today, considering I was unbalanced and stiff. Once I get my Pump refilled, I’ll have the doseage increased.

Before I close, I must comment off-topic somewhat. As I’m typing I have the Olympics on TV. They’re featuring this female US skier. Earlier I watched the lugers, which I don’t understand. These sports are so dangerous. With my spinal cord damage, I’m very alert and sensitive to anything that could cause paralysis or damage such as I have. Oh my, for me, it just would not be worth the risk to do such extreme sports. I know you can’t live in a bubble, but I don’t know about this extreme stuff. Still, it’s fun to watch others do it, especially when they are successful!!

Woody said, “If you can move it, you can strengthen it.” We were discussing my leg strength, particularly the muslces used to lift my leg, as in marching. That simple tidbit of information did wonders for my attitude. It gave me more hope.

The best way I can describe the difficulty in using my legs might be to imagine 50 pounds added to just above each knee. Realistically, maybe 30 pounds for me. When laying down, I can lift my legs barely 5 to 6 inches. If I try very hard I can somehow and only sometimes pull my knee up then straighten my leg out, but not very well but very wobbly.

The point here is my legs are quite weak and walking is always a challenge. I can even feel the delay when my brain is sending the messages down to my legs to MOVE. Just to have hope that this can get better is joyful. I didn’t realize it, but I didn’t have a lot of hope. When Woody said that, it was like adding wind to my sails.

It made me think of a friend’s wife. For different reasons she also has spinal cord damage. We go to the same doctors plus she got an Intrathecal pump implanted a few months prior to me. I don’t know her personally but I went to school with her husband and he is the grocery store manager in my town. I don’t think she will ever walk again. At first I thought she’d be able to regain her strength, but now I’m thinking not. I haven’t been to the store at the same as Phil to discuss, but today with Woody, he didn’t come out and tell me what her situation is, but in a round about way he did. I had just told Woody that one day I was a little frustrated and scared at how hard it was to rebuild strength, especially after being sick in bed a few days. I then told him I thought about this lady and how hard it must be for her to try to exercise after being in a wheelchair prior to her pump and not walking. Woody just said that there are some people who have to exercise to just maintain what they do have with the knowledge that they are for sure going to get worse.

Wow.

That broke my heart. First I was inspired to think that I had hope in strengthening my legs because I can move them. Then I felt such compassion for this lady and others who must live without the hope I have.

Something else happened today worth noting, though it’s a little embarrassing. I’m ashamed to admit that I have prayed for death not a few times, but many, many times. I didn’t feel the strength to want to continue physically, emotionally, and a little spiritually. But today I so blantantly hoped to live. This was a first. I found myself hoping for more time. I think I was smiling to myself a little even, I can’t be sure!

I’m turning to God for strength and courage; I’m learning to allow myself to trust in Him and be used. I don’t quite know how to explain it, only that it is a God-thing that is happening to me. He’s giving me the hope and incentive to look at things in a brighter way. Nothing’s changed really. I still hurt so bad and I still have all the physical challenges; I just look forward to tomorrow more than I did. That’s big enough for me.

I read a few of my original entries, back in October 2007. It felt like I was reading about someone else. It’s amazing how you forget things.

First, I was still taking walks for exercise and I was playing with my horse, Stoney. I was complaining about having trouble walking. I complained of pain in every joint. When I read some of those symptoms, I can’t even remember how I was feeling. Much of it doesn’t even sound familiar? That seems strange.

I was on treatment of Revlimid and Dexamethasone from August 2006 through November 2007. I suspect the pain in my joints might have been from either the Revlimid or the Dex, or possibly both? I thought the problem with my legs was from the Dex (steroid) but now I know it was my spinal cord atrophying.

It was a bit haunting to read those entries. I’m not sure why. But it was back when I still had my horses and my pets and I was living in my home on “the farm.” It was 17 acres, but I called it “the farm.” Well, actually it was two pieces of land that were attached. My house was on 12.5 acres and then I had a separate 5 acres. My sister has since purchased the 5 acres, as she lives on another 5 acres attached to it. A family rents my home now until they can buy it.

I talked of juicing. It seemed I was a little more into trying to eat and exercise back then. Things have certainly changed. I miss the animals. I miss the walking, yet I recall I was getting dismayed at the trouble I was having walking. It was very unnerving at first. I mean, when you used to walk around without a second thought, then suddenly you’re having strange sensations and limps; it’s been quite a journey.

I mentioned a friend, Joanne. I met her at a Christian book store. I overheard her talking to an employee of the bookstore about her cancer. My cancer was new enough to me that I walked up to her, feeling like we were in a club, and introduced myself to her, telling her that I had cancer, too! She didn’t take offense or think I was strange at all, but looking back, how silly of me. I realize now that while others thought I was taking “having the cancer” so well, I was probably still fighting the fear and looking for some comfort-level yet. Where else but with others who share the same battle? Anyway, we became friends of a sort and exchanged numbers and emails. Joanne had breast cancer and also had tremendous faith in God. She was very much into holistic treatment. She sent emails to family and friends updating on her own journey. She spoke of not only health but spiritual things. Her writings and faith were so amazing! She had a meeting at her house to share her experiences and knowledge of health issues. She showed us how she grew her own wheat grass. She juiced it and we all had a sip. I loved it. I thought it tasted delicioius. She gave us all literature and information on books and organizations on various health and/or cancer topics.

I don’t recall exactly Joanne’s experience, only that she tried to go as natural as she could. I believe she did have a tumor surgically removed but instead of doing chemo right after, she tried to do things “naturally.” It got worse and she then went one of those “Cancer Centers of America” places. I think that’s the name and I think she went to the one in Arkansas or Oklahoma. I forget which state it’s in..but these are the places advertised where they say they never give up hope on patients plus they treat everything. For example, if you are a Christian, they will include prayer as well as traditional treatment. She was very impressed with them. In summary, Joanne combined traditional with lots of alternative. I think she errored in one way and her husband sort of hinted at it later. She was doing some Chinese herbs and something happened…she ended up dying. Something that the herbs did that her liver ws trying to detox…I don’t recall…but she might have been going to pass anyway and this herb-thing just made it a little more complicated. I don’t really know. Joanne did write a really neat email to the email chain that she hoped she had not led any of us astray. Joanne said that one thing she did learn is that sometimes, no matter what you do, you may not be able to change your outcome. She said it much more eloquently. But she said some people can do all the natural things and still die and someone can handle their cancer with all the traditional treatments and be healed.

There’s no clear answer to what treatment course we should take. I guess we just make the best choice we can with what information we have and with what route we think we can handle. That’s the best any of us can do. The important thing, I think, is to just do your best and don’t second guess. Always look forward because looking back is surely a waste of time. Believe me, because I find myself looking back too much. I’m getting better at NOT doing it.

Actually, now that I’ve read a few entries, I’m realizing that I really have been through a variety of “hells” since then! Wow. I’m not trying to toot any horns here, but I am a little more proud of myself. I have been really feeling like a big old baby and complainer. Now I can cut myself a little more slack. I remember where I’ve come from. Maybe I was trudging forward so hard back then that I didn’t get to appreciate the uphill battle I’ve had. There’s the cancer, there’s getting to and from the appointments alone, there’s financial and insurance stuff, there’s personal issues and fallout with family at times, there’s losses and giving up things that meant much to me, there’s just been a bunch of stuff. I’m at a better place in many ways now than I was back then. Of course, the “unknown” is always the hardest and many things were not known back then. Heck, that’s when I had the Hitler-like female doctor! Ha! Oh my, those were the ‘bad ole days.’

I saw Dr. M yesterday. Remember the days I had the female oncologist who was so rude? I’m so glad I changed doctors. Dr. M is so kind. My numbers are back to where they were in August 2009. My numbers had just lowered on their own since then, so although they’ve gone in the wrong direction, they’re still not too bad. We’ll just watch them. I return in 3 months for lab work. Dr. M ordered complete xrays since it’s been a while since I’ve had them. He said we’ll just check to make sure there’s no small lesions. I’m not worried.

I did tell Dr. M that if my numbers change to where I need treatment, that I was not sure what I could stand. Since treatment usually comes with some kind of side effects, I just am not sure what I can cope with along with the pain I feel with this spinal cord damage. I told him that I may consider just letting it go and keeping me comfortable. He understand how I feel, wanting more quality of life. But for me, it’s more about “physical pain.” I just can’t take any more pain, discomfort, or inability to get around. If I wasn’t dealing with the spinal cord damage, heck, I’d be more into this.

Dr. M told me about his bil who injured his spine and required a catheter. He began getting infections which required hospitalizations. I guess his bil finally got fed up and the last infection just decided to not fight it anymore. They kept him comfortable and he died. Wow! Dr. M said he was horrified at first because, well, he’s a doctor and they fight for us to live! At least they’re supposed to. But Dr. M understands it. I just told Dr. M to promise to keep me comfortable. He said he would, that they’re good at that now days. This all sounds so morbid, but it really wasn’t. We were even cracking jokes. Somehow it was a much more light-hearted yet good conversation yesterday, yet writing it down now sounds morbid and horrible.

Oh well. I just know that I’m doing fine. And when I do start to progress, I may try treatment, but if it hurts or causes me more pain then Dr. M can help and keep me comfortable. It’s not so bad.

We’re so lucky with what they can do now, whether it be treatment, healing, or just being comfortable.

I didn’t go to bible study today because I didn’t feel like getting out in the cold and I was feeling too lazy to get out and around. I don’t know if I regret being lazy or not.

I had a good week last week, having two good sessions with PT, making it to my two different bible study groups, and one day even running several different errands in the one day. When I hurt I cowgirled up. It worked for most of the week.

A migraine got the best of me come Friday. I’ve been in bed two days straight, and finally today, Sunday, I’m vertical. Being off of my feet so fully for two days straight has certainly set me back; I’ve lost some gained strength. Tomorrw I see Susan (nurse prac.) to increase my medicine dosage. I did have PT scheduled for later in the day, but I plan on canceling that appointment. I think given the last few days plus what the increased dose of medicine does, I just won’t have it in me.

The increased dose of medicine exposes weaknesses. The spasticity disguises weakness in that it helps you stand relying on the stiffness rather than muscle. So when the medicine is increased to relieve the stiffness, you’re left with reality. It’s not been a real obvious change, but there’s a slight change. My legs feel heavier for a while, heavier than what they already feel.

When I walk now, normally, it’s as if I have 50 pound weights at just above each knee. My legs feel very heavy. This is because of the muscle I’ve lost due to nerve damage. Other muscles are compensating, but they sure must be wimps because they’re not making it all that easy! Hopefully with continued exercise and PT I can toughen up those wimpy muscles. And, who knows, maybe the damaged nerves in those main muscles will awaken again. I won’t lose hope.

Awwwwww. I was doing so good before this migraine fall. I look forward to having another good week, minus the migraine ending!

That title fits me in two ways.  First, I just can’t find a design on here that I can get comfortable with. I want one that is easy to get to “Site Admin,” is attractive, and easy on the eye or to read. I’m not real happy with this design. So, until I find the right fit, I’ll probably make changes quite often to the design of this blog.

Second, I still can not get comfortable in my body, BUT, the difference is that I am doing better. Yesterday morning I did not want to get up and out of bed to go to physical therapy. Uh-hum…my appointment was at 1:00pm. So YES, that is right, I did not want to get up even that late in the morning! There was an overcast outside, it looked cold and it was supposed to snow or ice!

I was toying with canceling PT when my sister J called to see if I wanted her to drive me to PT. I took her up on her offer. My feet and legs were hurting and not working very well. It was so hard to walk, even with my walker, when I let my dog outside to poddy. But once I got up and around I did better.

Because of my slow start I was fearful I would have a set back at PT. WRONG! I had a great session. My last exercise Woody put a belt around me and he followed behind me as I walked around the clinic without my cane! If I was to fall I don’t see how Woody would have caught me. I did not tell him that, but I would have taken him down with me if I fell. Most of my walk was down halls so I had walls to hang on to if I lost my balance. I did pretty good.

We did two laps. Then once we were back in the exercise room, he had me try to walk fast. That was a bit challenging, but it was interesting to see how well I did. Lastly, he had me walk backwards. I think what stinks about all this is that my grandson walks so much better than I do now!

The swelling in my ankles was the lowest it has been in I don’t know how long. After walking around it swelled up a bit, but not to bad. Even Woody is a little perplexed at my swelling in my ankles. I will ask the Nurse Practitioner about it next Monday when I go back to have my pump medicine adjusted.

Speaking of my pump, I am doing fine. I am now up to 80 mcg per day. Susan thought I may need to get up to about 100 or 120 mcg. That is so strange to think that before the pump I was taking 80,000 mcg’s a day and not having near the success I am now with only 80 mcg’s; it’s because the medicine is going directly into my spinal cord where the problem resides.

Today was a good day as far as my days go! I decided to push myself a bit and go to my Tuesday afternoon bible study (1p-3p). I am so glad I made it. This study is in its 7th week. I have missed the first 6 weeks of the study and have missed it. It was so good to be with these good people – AND it was good to get out.

Better yet, I no more got out and on my way and the sun actually peeked out of the cloulds several times during the day.

My feet burn badly. My calves feel yucky and my ankles are stiff, but it is doable. I’ve got to tell myself it is doable. It is darned hard, but I think that’s how you handle it. And when I decide to do that, it seems to work. I am having longer moments at a time where I don’t “think” of the pain. I know your body adjusts to “new normals.” My body has adjusted to lots of new normals since 10/05.

I don’t know if other people with Multiple Myeloma (MM) ever feel this way, but I often envy some people with other cancers. Notice I said “some” people. I keep seeing these people battling cancer and yet they are doing stuff. They walk and sometimes they even run and hop!! They can function. Even before this spinal injury from the radiation, this MM did something to me. When I first got sick, something happened to my right shoulder and arm and within three days I could not move my arm at all. I had a … gosh I forget what you call it now … but it’s a soft sort of tumor or collection of cells that MM has. The Thalidomide got rid of it for the most part, but I’ve not been the same since. The Stem Cell Transplant (SCT) also affected my joints big time.

It’s frustrating at times but as I’ve said before, I don’t have to look very far around to see people with much heavier loads than mine.

So, while I can not get comfortable in my body I am actually getting better at tolerating it. It just takes effort, motivation, and all that sort of stuff. I noter mentioned his son uses meditation. I think that is worth looking into. One thing at a time, but it’s certainly worth looking into.

Something that’s really bothered me, probably far more than the physical discomfort, is that I’ve felt spiritually uncomfortable for some time now. I have NOT lost my faith. I could not do that. I love Jesus very much and my faith remains strong and true. But it’s been my walk that has been my struggle. It’s been walking my talk and doing as I think my Lord wants me to do – that’s where I’ve felt sadness and failure.

I’ve prayed. Perhaps I could have prayed harder, but I prayed. The good news is that He is answering me. I can’t lose this moment though. I can’t stop hearing His answers.

The follow-up labwork did not show any problems related to having hyper-thyroidism. Doctor J said we’d just monitor it. I see him every 3 or 4 months.

Physical Therapy (PT) is coming along. My pump is also doing just fine. I continue to have the medicine increased slowly. With each increase I go through an adjustment period. As the medicine decreases the spasticity, it exposes weakness. Then once I exercise, then I gain strength.

I’m sad to accept that some muscles can not be recovered. Other muscles will have to compensate. I can see muscle starting to form, but it’s not the same. For example, my calf muscle is barely evident where before I had somewhat muscular calves. It works but it’s not the same. My legs are so very heavy. I have a feeling they will always feel heavy. I may improve a bit here and there, but it will always be a struggle to walk. BUT, at least I can walk. I need to keep reminding myself how good I still got it, because I still have so much to be thankful for.

One of these days I will strive to speak of only “my haves” and not my “have nots.”

But, I’m keeping on with it. This week I’ve driven to my appointments by myself. It’s a little lonely and yet it’s good because it lets me know that I can take care of myself.

Here it is mid-January 2010 and I still feel like I’m struggling. I am making some progress with physical therapy (pt). It’s slow, that is for sure. You have to do these exercises every single day in order to get certain muscles to work at all. Skip one day and you start to lose traction.

I just cannot figure out why I feel so darned fatigued yet! I’m not taking the heavy medications anymore. I take 10mg of Methadone a day, 5mg Norvasc for blood pressure, and then the liquid Lioresal-but it goes directly into my spinal column and should not be affecting my energy.

My PCP had some labwork run which showed I had indications of hyperthyroidism. He subsequently ordered further tests and I should be receiving the results any day now. He doesn’t feel it’s anything serious and nor do I, and whatever it is, I’m sure that there are medications to resolve it. Whatever, I hope I find the answer for this strange fatigue dilemma. It’s such a battle, though nothing compared to when I took the oral Baclofen.

I’m currently going to physical therapy usually about two times a week. I’ve been taught a nice variety of exercises and they are helpful.

I still have the burning feet. For the most part I just have to “cow girl up” regarding my feet pain. The alternative is taking higher doses of medicines like Lyrica. It helped a little for a while, but it got to where I would need a higher dosage to gain any comfort. A higher dosage would lead to more fatigue. So, that’s not an option. Cow girl up. The problem is in my spinal cord, telling false messages to the brain that my feet burn. So in my head I try to tell myself that nothing is really wrong with them and just try to think of it as a false message. It’s amazing what the brain can do and what “we” can do when we put our minds to it. Don’t get me wrong, the pain is always there; I just cope with it a bit better. Sometimes I can go through hours of not feeling it. It’s a strange sensation anyway. If they’re not burning, then there’s another sensation…and all I can say is that it’s indescribeable.

Once I know the results of this latest labwork, I’m hoping that some questions will be answered and issues resolved. Perhaps whatever is making me tired is also affecting my digestive system. There’s also a CT scan I need to have done to compare to last year…something about a spot on my pancreas. They already decided it was OK back then. I guess as long as there’s no changes. I sound like I’ve got lots going on. Maybe I do; but most likely that since I have some curious things going on that any little oddity discovered during a procedures in monitored. Don’t know if that makes sense…just saying that the doctors check everything out and monitor every oddity. I’m thankful for that.

I’m working hard on physical therapy. I’m thinking about getting back into juicing again. I’m hoping to resolve this fatigue and digestive discomforts I have soon.

In the meantime, I pray for Haiti….those poor people. Praise be to all the volunteers helping those people. I’m proud of the US for stepping in, as always. I’m proud to be an American, always.

A book that has helped me lately is Don Piper’s Heaven Is Real. Don Piper is the minister who was killed in a head-on collision with a Mac-truck. He spent 90 minutes in Heaven before he returned, painfully alive.

At first it [Heaven is Real book] was somewhat of a slow-read for me. Then beginning at about Chapter 16 of the 27 chapters, the book began speaking volumes to me. Don was 38 years old when he was hurt. He’d been pronounced dead at the scene and was already covered up. His body was mangled. Another minister who came by the accident after it happened convinced police and ambulance personnel to allow him to pray over Don’s dead body. The minister did not know Don personally, if I recall, but they had just left the same convention. After prayer and then the minister began singing, Don started showing signs of life. The minister had a very difficult time convincing the EMT’s that Don was alive. It’s been a while since I read the book [90 Minutes in Heaven], so I may not be describing this scene quite accurately, but you get the idea. So, though he is alive today, he lives in great pain. He lost so many of his physical abilities. He dealt with a long and painful rehabilitation. He misses the things he was not able to do with his sons and daughters, like play football with his sons. But he talks of how one must accept his or her new normal to move forward. Don directly addresses how to survive and perhaps thrive, or at least how he does. Make no mistake, it will always be a battle. But it is doable, with God’s help.

I believe I will reread this book. I found hope and encouragement in hearing another person express the pain they must deal with every single day. I found myself hearing my own thoughts when reading some of his thoughts, feelings, and experiences.

So, I need attitude to get along. Sometimes I have so much hope that I begin to think there will be a day on this earth that I will no longer feel this pain. I might not think that right out in the open, but it is there in my subconscious. While one should never lose hope, it can be dangerous to let unrealistic thoughts become expectations. Sneaky little thoughts like ‘one day I’ll be jogging again, and I will get my figure back, and I will be able to go to the bathroom normally, and my feet won’t burn anymore and….and…and…’

Sometimes I can be so full of cheer and spirit that others are so impressed with my positive attitude. Often I am faking that cheer, but gosh, don’t we all have to do that at times? Otherwise, we’d all be such gloomy and miserable people and who would want to be around us? I don’t like being around chronic whiners. I have always believed that if you think positive that you can make positive and vice versa. I still think that.

And do not misunderstand me. I do have times where I am content and reasonably happy with life as it is for me. But something is still missing in my heart of hearts, and I know this. And this is OK, because I’m working it out. I’m just “blogging” my process I guess. I think what is missing is perhaps a more consistency in my coping skills? Maybe that is it. Sometimes I think I’ve got it. I start to set goals even and look forward. I even think that at times, “ya, I can manage this. It’s not so bad.” Then sometimes I’m fixated on this feeling of burning and stretching in my insides down in my private area and the burning in my feet and the weakness and heaviness in my legs…and oohhhhh woe is little ole me!

I often wonder about those people who really are cheerful in the midst of great trauma and pain. They do exist and they are not fakes like I am at times. One good example I think of is this really cute young man. I think he’s from Australia. He’s got one of those sexy accents anyway. He was born without arms or legs. He’s got a little flap for a foot (it appears from a distance). His dad is a minister, so he was raised with an awareness of God. It was difficult on him, make no mistake. But somewhere along the way he was reading Scripture. It was in John 9, I think, when he read that God let the blind man come about so that ‘God’s works might be displayed in him.’ This spoke to this young man and he realized his purpose. He travels all over the world witnessing now. He said that he does not wish himself any other way now. He also says that he’s not always up-and-cheery everyday, either.  Still, I find him far worse off than me, yet he has such a beautiful and happy spirit.

The difference with him might be that he was born that way, you say?  Well, there are other great people who have experienced things later in life.  There’s that lady with “Tada” in her name?? I can’t think of her right now.  I believe she was a professional skier?  She had some great future ahead of her anyway and then she got paralyzed from the shoulders down.  AFTER that happened she met a wonderful and handsome man and married.  She is famous and speaks of God and her faith all over the world.  She’s written books!!  There’s many people with stories such as hers!

So, what about me?  I have not near the issues as some of these people.  At least I didn’t experience this spinal cord damage until in my 50′s.  I enjoyed having babies, horses, jogging, dancing, and many things for some time before this happened. 

I handled having a terminal cancer far better than this spinal cord damage.  I think because I have faith in Jesus that while I didn’t/don’t like the idea of leaving my boys and their families so early in life, that I know we’ll all meet in Heaven with perfect bodies some day.  So with that faith, it was easier for me to accept. 

But now that I’m in this wonderful remission, I can’t take advantage of it the way “I” want to do it.  Maybe that is key. Maybe it’s not “my way” that is important.  Maybe it’s how “God has plans for me” that is what is important.

Last week I had my first physical therapy (pt) appointment. My physical therapist (PT) goes by “Woody.” He’s very professional and very kind. I like him very much and I’m very, very comfortable with him. We spent most of the hour getting to know one another, which is important since we will be working closely together. Plus, he needs to know -and- I need to feel comfortable telling him all about my strange sensations I feel in my private area. Surprisingly, I was reasonably comfortable expressing all this to him and he appeared to be very knowledgeable and familiar with my symptoms.

Woody will help me gain strength and stability in my walking. He may also be able to help me do some desensitizing in my feet. Woody explained how my spinal cord is sending incorrect messages of pain to my brain that my feet feel like they are burning. He explained some examples how to go through this process of desensitization, but we did not go into a lot of detail at this time.

My initial homework therapy is to exercise with a child’s ball. The ball is approximately the size of a soccer ball. He had a soft rubber ball that sort of gave if you placed pressure on it with your foot. I am to sit down, legs bent, and place my foot on top of the ball. Then roll my foot forward and back with control, no shaking or wobbling allowed. Next roll the ball in circles using my foot. First roll your foot clockwise on the ball several times, then roll your foot counter-clockwise several times. Woody said I could not do that enough each day. Also, place the ball between my knees and press my knees together. That exercise will also help strengthen the muscles in my bladder area.

I did not get a chance to go shopping for a child’s ball to exercise with, so I ordered a ball online. I thought it would be here by now. I see Woody next Tuesday. I never thought of improvising, but I can go through the motions without a ball. It’s just more effective with a ball. Oh well.

Since getting the Medtronic implanted 11/4/09, I’ve got off several medications. I discussed it with one of my doctors and I stopped taking the medicines slowly. First, I’m getting way less Baclofen through this pump. I stopped taking the Effexor and I stopped taking Lyrica.

I got the Effexor primarily to make others happy, I feel. I was in the midst of figuring out what all these painful symptoms are from plus getting to know new doctors. Being a very expressive person, I was very clear how uncomfortable this pain, tingling, and burning sensation is. A few of the doctors and my sister thought it would help me tolerate the pain a bit better. Dr. P said it best when he suggested I take the Effexor on a temporary basis. When he suggested that, I decided to try it.

My PCP is the one who prescribed Effexor. I did not notice much help when I first took it so the doctor increased my dosage. Again, I didn’t feel any value from it. If anything, I felt like it gave me more of an edgey feeling and I had to keep my edginess in line (in which I did). I don’t see my PCP until just before Christmas. I don’t know what he’ll think, but I feel better without the Effexor.

The Lyrica helped a little with my feet pain, but it no longer helps that much to continue it. I’ve tried to discontinue the Lyrica four times before and I would immediately hurt and get back on it. As time has gone on, I was able to spread out not taking it. Since the Medtronic pump, I was able to stop the Lyrica. I think since there’s less spasticity in my legs, there’s less pressure on my nerves, so less need for the Lyrica. I was able to stop the Lyrica this time, anyway.

My goal is to take as least medicine as I can. For me, that works best. However, IF I need something or if a medicine truly makes my life easier or less painful, I have no problem taking the medication. It’s just when there is no value, very little value, or worse…side effects that do not make the medicine worthwhile, then in that case — I just as soon not take the medicine.