It’s been nearly two months so I figure I need to update. In some way I wish I did not disclose this blog to family or those who know me personally. Sometimes it’s just best to remain…anonymous.
Anyway, updates. Non-health related: Closed on the 5 acres but unfortunately the 12.5 acres with my home on it fell through. The people really want the loan and are qualified, but few banks will approve a loan for a 35 year old modular home, which is what I have. By now it also needs TLC. It appears I’ll be paying double payments (house payment/rent payment) for a while. I am able to do this because of the proceeds from the 5 acres. I don’t know how long I can do this, though. One obvious reason, the money will last only so long. The second reason is that for once, I would to focus on my health and stop worrying about finances, etc. Unfortunately, unless the property sells for at least the minimum I can accept and pay off the loan/equity/realtor fees, my only other option is to continue as I am until I run out of $…then I guess try to work with the bank…or let it go back to the bank. I’d be worried about finances still, if that occurs, as I know one does just not walk away from a financial obligation without repercussions. For now, I’m trying to keep the faith that it will sell soon. The original people are still trying…I think. Gosh, they have $23,000 to put down on it!!
Health related. My MM is still low enough, smoldering I guess, that it does not require treatment. This is the good news.
I still have my other issues. It seems to take forever getting into the new doctors. I chose to wait on seeing the “best choice” neurologist. My first available appointment is April 15th. What I hope to get from him is not only a more thoroughly explained diagnosis of my spinal cord damage, but also a better “recipe” of medications to cope with the side effects.
I’m putting the rehabilitation doctor on hold sort of because he cannot be of much help until I get my issues under control. The rehab doctor can help me cope with my disability, in other words, but the question remains: what is my disability?
I’ve tried the suggestions the rehab doctor has recommended for bowel movements, but they’re not working. I’m hoping the neurologist has run across several other people with the same issues as me. I would think a neurologist would have more experience in something as complicated as this rather than the rehab doctor. We’ll see. This neurologist not only has a reputation of being one of the best in this area (near Kansas City, Mo), but he also has a reputation of having great communication skills (bedside manner) with his patients. After what I’ve been through with doctors, no matter what pain I’m in while waiting to get in to him, it’s worth having a decent doctor.
My numbess seems to have increased. I’m not sure whether to call it numbness, or is it tingling. It’s a bit of both.
My bowel function, or lack thereof, seems to have changed some, too. That is what is so tough with me…my symptoms keep morphing.
I have a wonderful urologist, who while checking me out, went above adnbeyond the call of duty. He checked a CT scan he did with one done in January in the hospital. He found where they missed a “cystic mass on the anterior part of the head of my pancreas,” whatever that means. Honestly, it’s probably nothing at all, but it might be enough to cause further research and maybe find out what my problem is. My stomach just swells up, gas I guess, and it’s abnormal. I wish I could explain it better. It’s more to the right side and it’s not necessarily over the food I eat. Sometimes I hardly eat even.
Without going into much gruesome and gross detail, I just feel like everything halts a little ways before the very end…if you can read between the lines. Suppositories do not help when this happens. I try Milk of Magnesia then. It takes at least two doses (two days) and then, maybe…something..but not much and it still takes several days to complete much.
Suffice it to say, I’m just all messed up in my digestive process. It just should not be this complicated. It’s more than “gas build up.” Something is causing this slowing down, building up, and swelling of my abdomen. I’m just slightly nauseated. My stomach area is feeling a bit of being maybe..more numb on the inside. I just wonder if this spinal cord damage is spreading and maybe affecting my intestines and how they work?
I don’t understand the body, how it works, and so on.
As a result of what the urologist found, he relayed the information to my new pcp, who has referred to to a GI doctor, whose office is supposed to contact me to set up an appointment. I’ve not heard anything yet. I should have called my doctor’s office today, as it’s been three working days. Then again, the office girl told me it could take three days, so I’m trying to remain patient. In the meantime….I suffer. If I don’t hear anything tomorrow by 10am, I’m calling my doctor’s office.
My urologist and I go back to 1997 when I had a kidney stone. I’d gone to a local hospital where a doctor accidentally punctured my ureter and kidney when trying to poke a stone back up in my kidey. It had been blocking flow for 3 days, they’d tried flushing me with IV fluid and waiting for it to pass, and it would not. So up through my urethra they went and the doctor had the accident.
I found later that the more updated procedure would have been to do a nephrostamy (sp?) and go directly in through my side (kidney) to remove the stone. This doctor used a correct yet more outdated method. It’s not that he made the error in poking my ureter and kidney, it’s that he let me lay there for over 6 hours with all the infected urine and dye to release in my body…plus he didn’t know whether the stone was still in my kidney OR in my body cavity. I said he “poked a hole” in my ureter, but he really nearly ripped it apart.
When my family saw how panicky he acted plus he’d been arrogant and rude prior to this error, they had me transferred to another hospital. There’s so much more to this incident, but the moral of the story is that this is when I met my current urologist, Dr. F. He is a very good and ethical doctor. When I did my recent change of doctors from that one group where I had to go to “their urologists” to this new team of doctors, I decided to return to Dr. F.
After all that explanation, my purpose was to relay what Dr. F said about me the other day as well as back in 1997. I wish I could remember his exact words, but the jest of it was that ‘when I say something is going on in my body, I’m generally right.’ I’mrelaying this because I worry that I sound like a hyperchondriac or you know, the stereotype that goes on and on over every little thing. I do not do that.
Something is going on with me and it’s very painful and discomforting. It may be something serious or it may just be something that causes this great discomfort, but I just feel it’s something the doctors have not figured out yet. It’s not just gas or due to nerve sensations from my spinal cord stroke/damage. It the spinal cord damage has caused this, then, it’s something that needs to be particularly identified and treated because no normal human being could live…day after day..with this type of feeling.
I’m finding I’m having a more difficult time walking, too. Is that more nerve damage OR is it related to whatever is going on causing my digestive issues? I just don’t know. I’m doing my best to describe my problems and get in to the appropriate doctors. Until you have an established relationship with a particular doctor, it just takes red tape. The only thing I could do is another emergeny room run..and there is no reason for that. This is just so frustrating. I’m at that point where I just have to wait for something to pop or break and it be an emergency OR wait for my appiontment while in increasing pain and discomfort. I also worry that whatever is going on could be progressing.
So, that is my current story. I don’t mean it to sound depressing, I am just journaling my experience. After I write something like this, I always contemplate deleting it…but this blog’s purpose is not only to give me release by typing it, it’s also to help others in case they have similar issues. This blog is on a “healthblogs” site and not just a regular “journal” site. I guess I’m trying to defend this gory entry.
I anticipate that in a few months, my entries will sound more hopeful and decided. I anticipate that I will have some answers and solutions from these new doctors I’ll be seeing. So, with providing all these details…perhaps if someone else has these symptoms, they could help.
One thing, reader, please keep in mind. If you are just anther person with Myeloma, this has a very high percentage NOT to happen to you! I don’t know a percentage because I don’t know exactly what is happening to me. It’s just that Myeloma does affect the bones. I did have a lesion (tumor) at my T8. I did have radiation and kyphoplasty at the T8. All this probably contributed to my spinalcord damage. That is all I know. This could happen to another person with Myeloma, but I’ve yet to come across another. I put my “story” out on the IMF email log and no one else has responded with this. No one has had a spinalcord stroke diagnosis as I have had anyway. If there is a someone out there who has, maybe they are dealing with all the yucky symptoms and not journaling about it like me. Who knows. But that is why I’m journaling about it. I don’t think this would have happened had I never had Myeloma. I never had any signs of bone issues. I never had back pain or anything. Somehow this has come as a result of something the Myeloma has done. I’m going by only my instincts. But given I was a runner and cared for horses and mowed my grass and other such physical things on my own without a complaint of real physical pain…I just don’t see this as a result of anything other than the Myeloma damage.
Another side bit of news. I have experienced my first grandson’s #1 birthday as well as a new grandson a few weeks ago. Grandson #1 lives near here and I see him more often. Grandson #2 lives far away. I sadly miss both my grandson #2 and his father. My son and his wife here were going to drive me down to visit, but I am in no condition to travel let alone be far from home at all…at least until I get al this figured out. I am just thankful that Grandson #2 is healthy and loved.
I never thought that by the time I was a first time grandmother I’d be in this condition, not able to run and play with the babes. I can’t even hold and walk them; I can only sit down and hold them. But as soon as I say or type that, I realize that there are countless others who lose their sight to see or ability to even hold their grandbabies and sometimes it involves their very own babies. So, I need to be thankful for what I can do and for the good things that still are.
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