A journal of healing

Archive for the ‘medicines’ Category

August Garden

aug garend 3  The garden is beat up and truthfully, so am I. We have had 90 plus degrees every day (28 days to be exact) and very little if any rain. It finally rained yesterday, right after I watered all the pots. If I knew that was the key to make it rain. Actually, I watered every other night all summer. I also make up buckets of plant food water and give them that. It is a lot of work. And I am tired of it.  I will long for it around January, thinking that the work was no big deal. But the heat and humidity has barred me from sitting out there until much later at night.

aug garden 4 I do not bother with the lawn. If it does not grow we do not have to mow it.  Usually I pop out to the chair around 7:30 after feeding my bunnies, who usually join me around that time.  Petee But with the heat and the bugs, it has not been very fun.  I try not to use bug spray because… well, I am covered with Psoriasis lesions.

This is a whole other thing with this summer.  I am now on my sixth drug in a year. I went from Enbrel (after 8 years it stopped working as they all do)  to Simponi (gave me high blood pressure, like stroke level)  Cimzia (raised my blood sugar to over 400 with one shot) Otezla, the glamour drug at $80.00 a pill (which was the most horrific one of all, I was so sick on it and it made my arthritis worse) to leflunomide, (raised the blood sugar back up there to almost 400) to Humira. I have only had two shots of Humira and it is helping the PsA but not the Psoriasis.

aug garden 5  As beat up as these plants look, so am I. I am grateful for the relief on the arthritis (PsA), but I am a long way from where I was before. I can only walk short distances, and at least I am not crying when I get done grocery shopping. But the lesions are awful and they itch and hurt. My legs and arms and scalp are covered.  But the next thing issue is was something that I have been trying to avoid for the last 8 years.

Diabetes.          aug garden 4  Ever since I was old enough to go to the Doctor, they have tried to make me out to be diabetic because I am fat. Up until they started giving me all these very strong drugs, my blood glucose has been perfect. It never was above 5.5. When I first was truly diagnosed with PsA, they gave me a cocktail of Methotrexate  (MTX), prednisone, and Advil prn. My A1C went to 13 and no one caught it for a while. To bring it down, they gave me Metformin on top of all the other crap. The result was my right kidney failed. They took me off of everything and after a while, my kidney came back to about 41%. The sugar came down but it never has gone back below 6.  Now it is back up to 8 or 8.8 even off the last drug that increased it.  So now I have to take Januvia in the am and a shot of 10 units of insulin at bedtime. Already my morning readings are improved after two shots so I am hopeful we can “jumpstart” my pancreas again. If not, this is a life sentence.   My doctor told me this, thinking it would help: “I had diabetes when I was 29 and I got rid of it by losing 40 pounds.” Well isn’t that ducky? At 29, I did not have any health issues! All this shit started after my divorce when I was 47. But I could go off on a tangent about how trauma affects your health, but I am saving that as I am doing more research on it.

aug garden 1  What is keeping me together is we leave for the River next Sunday. We will be gone for 10 days. We have people staying at the house with the “kids”. They use our house as their vacation spot.

Bro Brow cooling off I am going to try to stay cool, get through this week and go to the one place in the world where I feel safe and grounded. I will have a ton of pictures to share.

Risky business

ashwagandha

If you knew that doing one thing in the hopes of a better situation would automatically cause another difficult situation to occur, would you take the risk. If you take any form of medicine, you do that daily. There is not one chemical drug out there that does not have some risk when you take it. They even put this in writing now on the drug pamphlets that come with the prescribed drugs. “Your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.” Are you willing to take those odds?

Sometimes there is no choice. You have to live with the side effects. I have gone through a series of drugs and have come up with some real doozie side effects. I took a drug and after four days it covered me with painful hives from head to toe. The answer from the doctor was stop taking the drug. But I was taking it to fight off an infection. I have gone through three major biologics and now a pill for my psoriatic arthritis in less than a year and half. I reacted to one with blood pressure readings that were stroke level. “Stop the drug.” The next one put my glucose over 350. “Stop the drug.” The newest one causes incredibly leg cramps. But I am sticking with it because it is helping my arthritis and my skin is clearing. But I only take half a dose.

In my research to find out more about the side effects of the Otezla I started reading about natural remedies. I have always preferred a holistic approach to my wellness. I have dabbled in alternative medicine now for years. I even worked with a homeopath, but got concerned with the lack of certification requirements for that approach. I have participated in energy therapy training. I have been interested in green medicine or herb tinctures for years.

I have been learning about Ayurveda medicine and find it fascinating. There is so much about it that it makes great sense to me. I like that the practice really delves into the body makeup and the whole person from the on-set. I have never had a doctor ask me if I like or tolerate spicy foods. But in Ayurveda, everything about you from the foods you eat, to how you relate to the world is important and part of the symptom management.

What started me looking was the horrendous leg cramps I was getting. I also noticed I had an eye twitch and was experiencing sleep issues. The solution was magnesium. I have been taking 400 mg at night and the leg cramps have all but gone. But I was also waking up in the middle of the night with anxiety attacks and only sleeping for four hours or so and not getting a good night’s sleep. I added melatonin for sleep but I was worried because you are not supposed to take melatonin for long periods of time. I also started to have really bad nightmares.

In my research I came across an herb that is supposed to be a wonder remedy. Everything I have read about this herb is amazing. But I do not go by the ad information; I go to patient user boards and medical evidence based journals. What I find amazing is that this herb and so many have been around for thousands of years. You want to talk about evidence based time studies. We do not have that amount of prescribed time on any man made drug. Right there is reason to get interested.

The herb I am trying is Ashwagandha (Withania somnifera). It proposed to do so much for so many areas of wellness, many symptoms I experience. It helps with sleep issues, boosts the immune system, can lower blood glucose and also blood pressure. I encourage you to look it up because there is a lot out there on this herb and I do not want to sound like an ad.

I am fascinated with the possibilities of getting off as many man made drugs and all their rotten side effects as I can. When the drug I took that raised my glucose A1C to 9.3, the remedy was to take another drug at night to bring it back down. The second drug costs $421.00 a month (without insurance). It can cause pancreatic cancer. Wahooo…. Just what I want. I truly cannot tell if it lowered the levels, or getting off the drug that caused the higher level is what is lowering the levels. I would have to go off it and see what happens. Another risk, but I think I have to try it. I cannot take certain cheaper meds like metformin because my kidney was compromised years ago when I was prescribed a pharmaceutical nightmare. This is a never ending circle that many folks get caught in as the body ages and they start taking more and more drugs to feel better.

My cholesterol was normally low most of my life, again surprising the doctors. It has steadily increased over the years to the point of being 238. My doctor wants me on a statin to bring it down. I tried it and had an immediate reaction and said no. I started taking fish oil religiously this winter. My last lab showed my reading at 188. I dropped 50 points in two months with taking the fish oil which costs nothing. My husband also got off his prescribed statin and took fish oil and lowered his back down significantly as well. Fish oil has no side effect and is a cheap OTC solution.

The issue with non-prescribed and non-regulated herbs is dosage and interactions. A prime example is teas. Chamomile is a very popular one for calming and sleep. It can significantly thin your blood if consumed in quantity. What is that amount, I do not know. Many herbs and minerals can become toxic to the body and do more harm than good if taken in large doses, and that matters by the individual. If the government steps in to regulate this area of health, the cost will skyrocket. The Ashwagandha could possibly aide me in getting off two drugs, cost together over $650.00 a month (uninsured). A bottle of 60 capsules cost me $16.50 and that was a high end product and an expensive store.

I will share with my GP doctor next week when I see him my viewpoint on delving into more natural remedies. He is going to be surprised with the lab results as my A1C dropped over two points also in two months. He is a young Indian doctor and we have talked about natural remedies. I am not sure if this is a conflict of interest for him, but I want him to be aware. He did not prescribe the arthritis medications and was upset with the reactions I was having.

I also want to be clear that your wellness is a team effort. Unless you are a doctor, self-prescribing can be dangerous. But I also feel very strongly about forced care plans. I am very warry of any practitioner who promises the world or threatens patients who they deem non-compliant. “If you do not take this medicine I will not see you.” But patient centered care is my vocation and a whole other topic.

 

 

 

Too sweet

rhoda 1 2015

I read a post on Facebook this week that made me think. It was the concept that someone’s mother had spent a lifetime devoted to her health with balanced eating and exercise and covering herself with SPF and clothing to protect her skin. And now she had multiple health issues including diabetes and skin cancer. The post encouraged you to enjoy life and not restrict yourself in anyway. I am paraphrasing. The first response to the post was to eat more bacon.

One of my battles has always around diabetes. Since I was in my early twenties, doctors have tested me for diabetes and been stumped that my levels were always low.

10 years ago, I was crippled up with Psoriatic Arthritis. PsA (Psoriatic Arthritis) can hit anyone at any time. The result was I was put on tons of medications to help bring the incredibly high inflammation down. It did, but not without major repercussions. One of the drugs they put me on was prednisone. It shot my A1C glucose levels to 13. The fix at that time was to put me on metformin, which eventually crashed my kidneys. One will never be better than working at 41%.

Azalea 2

I am able to see “My Chart” via the intranet going back to 2011. They put me on a biologic called Enbrel and I was on it for many years. There is a steady incline in my glucose levels for those years.  My weight has not fluctuated in reflection of the A1C levels. When the Enbrel failed (you build up an immunity to it and it stops working) they took me off of it, and my levels started to go back down. I was then put on another biological this early summer, and the levels start to creep up again. That drug caused my blood pressure to go through the roof and so I was taken off of it. And again, the A1C came down. My blood pressure has returned to 120/80.

Three months later, I was put on another drug called Cimzia. I had to give myself injections every two weeks in my gut. I knew after the second week of shots, I was in big trouble. The day after the last shots I decided to take my glucose reading at home and it was 365. I was terribly upset. I monitored the levels for the next weeks and the readings were all over the place with many over 350 but never came back down no matter what I did below 225. I had also gained 11 pounds in less than four weeks.

I stopped the shots. I stopped eating any and all sweets. This was horrible as it was the holidays and I normally bake and make candy. I cut out all bread. I did not eat much pasta and if I did I measured it. No cookies, no candy, no cakes. I lost the 11 pounds faster than it went on. But my glucose or sugars were still horribly high. I discovered that my readings in the morning were the highest. In the afternoon, I was coming down significantly. I had my labs taken and the A1C was 9.3. That was from 7.2 when I was coming off of the Enbrel earlier in the year.

Chives

I will be fighting this diabetic battle for the rest of my life. MY GP is hoping that by putting me on a small dose of Januvia at night, we can lower the morning readings and maybe kick-start my pancreas. He feels the drug(s) may have caused impaired glucose function and the pancreas stops working at night. If I stray from my restrictive diet, I see it immediately in the readings. It is not worth it. I thought I would drop a ton of weight. I am not eating any bread at all and very limited other carbs. I read labels for sugar and discovered that many low fat items have added sugar. For example I eat cottage cheese in the morning instead of no fat yogurt which has a ton of sugar and carbs. My weight has not changed since I loss the 11 pounds. BUT….I am not gaining either.

My point is that we cannot ignore our health like the before mentioned post. If you are over 60 and have no major illnesses, you are truly blessed. Doctors try to help with medicines and many patients will readily pop something in their mouth in order to remedy a malady. But too often drugs do not fix, they mask symptoms. One fix often causes another issue. I am resigned that there probably will be a diagnosis added that will include diabetes mellitus no matter what I do. I am going to fight what I can until my quality of life is such crap that I don’t care. But I am beginning to understand why old people can get crotchety!

 

Being controlled

Kitty

Ever have a dream just before you get up in the morning and know that it is going to stick with you for the rest of the day? I had a doozie this morning. The dream demonstrated my issue of not having control in my life and the reality that we never really do have control. And the best thing any of us can do is to stop fighting that very thing and trust that things will come out ok.

And for the most part of my life, this has been true. But, it does not always seem like it when I am in the clutches of something that has me wrapped so tight that I snap at things and I am not a very peasant person. I do not think there is a being in the world that does well being captured and under the control of something that seems beyond their ability to change.

And that brings me to a situation that I have along with many other people and that is being under the control of having to have a medication in order to survive. It goes hand in hand with having a disease that is inherited or brought on by no fault of the being. There is a lot of that out there. And until you have something like this or know and love someone who is in that situation, it is hard to understand what it does to the person.

I am writing about this because of something that happened recently. I have friend who has MS. She is well controlled most of the time. But she has flares and when she is in the clutches of a flare, she has a tendency to be a bit sharp. Normally, she is bubbly and personable. The last year has been terrible for her and I have seen the decline in her over the last couple of years.  She is on very expensive drugs to help her maintain. She just recently lost her job and it was due to her inability to get the work done and in her inability at times to get along with her team. No one on her team seemed to be able to look past her anger and forgive her for being nasty. She was letting the disease control her and she really needed some help with that anger.

I also do not think people understand the warrior she is. Every day she got up and came to work, even when the pain was so great she would have tears. No understood her humiliation when she had an accident at work because she could not get to the bathroom in time. It became a joke around the “watercooler”. And yet, she would come back to being her funny self when the pain was less and make jokes about her situation. Now, she has no insurance and no income and I pray she will find help.

I realize now why old people sometimes are just very nasty. As the body deteriorates and pain becomes your constant companion, it is very hard to pleasant all the time. Alcohol is a method for many in pain which then leads to alcohol issues. Sometimes, anything will do as long as it takes the pain away.

And this brings me to the point of being controlled because you rely on a drug to survive. We live in an amazing time that there are so many drugs and procedures to keep people going who in past times have died painful deaths. I am grateful for the medicine I have available that twenty years ago did not exist.

But at what cost?  Along with thousands of people, I am in the control of these drugs. I will need them for life. One keeps my blood from clotting. The cost is I can easily bleed to death. The others are for my Psoriatic Arthritis and the side effect possibilities also include a higher probability of death due to cancer. The most recent drug I am on is causing me to gain weight, which is the last thing I need. But it is a side effect and out of my control. The drug I was one before, allowed me to lose weight and the one before that put weight on. This new drug is not doing anything for my psoriasis, and so I am beginning to break out again and it also doing little for the pain in my joints. But it is working on my gut issues. I have to stick with it for at least six months before we try something else. Unless like the last one, I have an emergent issue like an inflated blood pressure or some other reaction. Again, all out of my control.

There are so many debilitating diseases out there and more everyday being diagnosed. It is an amazing world we are in if you can get the medicine you need in order to survive. This brings up the huge topic of insurance which is the king of control. I will never understand how an insurance company can refuse their insured drugs prescribed by a doctor. Who the hell are they to make that decision?  I have often had to wait months for a decision on a drug that my rheumatologist wants me on and all the time there is deterioration going on in my joints. This last time while waiting for my approval, my two toes started to curl up so bad that shoes were becoming a problem.

I am writing about this in hopes that someone will read this and be kinder to someone who is in pain. I am hoping this will help people to see past the nastiness and be patient and understanding. When someone is pain, it is easy to react in hurtful ways without even being aware. But it is not about you. It is like being a captured animal and the cage is pain.

very close kitty

Rough water

rought sea The River

Have you ever looked at someone who gets out of a handicapped parking space and watch them walk completely normal and even sometimes smoking a cigarette and wonder; “Are they really handicapped?” Or seen a large person struggle to get out and then lumber into the store and think, they should park farther away and walk for the exercise? There are so many people out there who have chronic illness that do not manifest in bloody sores or stumps for legs. But they still are impaired. I often wish that people who know me would walk in my shoes for a day and see how they would manage. I do not have outward signs of what I deal with daily, other than being a large person. But that says it all for most people. I am fat. And what always follows fat is lazy. However I am not lazy in any manner. But this is not about being fat. It is about chronic illness.

I have a friend who husband has been sick for a while. He stopped working, making his poor wife support the family of three. He stays home and often would not even get out of bed. I used to get really upset with my friend who always had an excuse for him. On top of that he smokes a lot of pot. They both smoke(d) cigarettes. He was finally diagnosed with Crohn’s but the medication was too prohibited, I guess, for him to get it. I am not close to her anymore but see her on Facebook. He was just in the hospital for surgery and I am sure it was his Crohn’s. To look at her husband, you would never know how sick he was. I was just as guilty of judgment like so many others.

I face many issues daily, including Crohn’s like symptoms. They have only diagnosed it as Inflammatory Bowel Disease, but Google that and see what you get. No one wants to talk about it. No one wants to hear how you suffer. It’s funny, women will go on and on about childbirth extolling all the gory details until in a hushed tone they will add, I pooped myself.  Even my rheumatologist did not want to hear about it. His reply was to go see the doctor I saw for my colonoscopy and stat. He prescribed Imodium.

I discovered that this is not an unusual progression for Psoriatic Arthritis. Not through scientific resources but from other people who are diagnosed with PsA. It is truly a crappy little secret, pun intended. There are a few drugs they prescribe for both issues. Who knew? I did not know that these changes in my physiology were part of the disease progression. Since I was diagnosed years ago, no one ever said I was going to have this issue and here is what to do. They still aren’t telling me what to do. Matter of fact there is little evidence based information on the topic of the link between PsA and Crohn’s.

After reading and talking to my Rheumatologist, we decided to go with a new drug called Cimzia. I have to take two shots every two weeks in my gut. They are self-administered syringes and not injectable pens. Thank goodness I do not mind shots as they are huge syringes. It could take up to three months to actually see any change in my PsA but already my gut is better. Not great, but not feeling like I have to go to the bathroom every five minutes or having a surprise when I have no place to go is a big help.

But in exchange for the things this drug can do, there is always a side effect. For me, it is charlie horses. I had this issue before when I was on Enbrel and it became constant and horrible. I tried to tell both doctors about it and neither one had a way for me to deal with it. I am not dehydrated. I am not lacking in vitamins. Once I stopped the Enbrel, they stopped. I went on Simponi last year and then in August had very dangerous reaction of it spiking my blood pressure and had to come off of it. Now, after only one series of Cimzia shots, the night leg cramps are back. I only slept last night in two hour blocks before my feet or legs would go off and wake me up. They happen in the day where my toes go up the wrong way. The circulation is fine and my ankles are skinny. (They are the thinnest thing on my body) I cannot find much about Cimzia either, not even on my user site. BTW, when you want to find out how a drug works, go to their chat boards. This is where you will really hear about issues from the people who use the drugs. This is much more realistic than the manufacturers statements. For example, I would not have known about the issue with Simponi raising blood pressure. On the manufactures sight they say it is only  a 3% chance. But, because I was aware, I was able to deal with it.  I knew it was a reaction I had from what I read on the user boards and sought medical attention. One person was hospitalized for his reaction which spiked him so high he was a candidate for a stroke.

My point is; we never know what a person is suffering from by the outward appearance. Things like depression and chronic illness and even grief are often not visible from the demeanor and appearance of someone. Often, when you live with these factors, you learn to just deal with and put on a pain free veneer.

I wrote last week about the fact that people are uncomfortable with the suffering of others. I quoted from another blog; He said. “instead of trying to cope and bury your issues, live with them. We are a society where other people’s suffering makes us uncomfortable.” He said that is why people want to help. “It is not really about the sufferer, it is about the dis-ease that suffering generates.” The author, Tim Lawrence, is speaking not about just illness, but grief and loss in general. You can find the rest of his blog at this site; http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

So yes, I am whining this morning. But I am trying to offer awareness. People deal with things in their own manner. My husband, who has arthritis in one knee, thinks he is a cripple (until he wants to play golf.) My other friends all have issues and they all deal with them in their own way. My way is to pull inward and shut off from people so I do not have to explain myself. I am not angry, I am in pain. I do not want anyone to dismiss my pain and tell me to get over it. It exhausts me and not sleeping is not going to help. It is very real. But it also very lonely and isolating.

 

 

Resolutions

dog1  It has been almost two months that I have been going through a “thing.” I am on the other side of it now and thought I would share. To help illustrate my thoughts, this young golden was photographed up at the docks in the TI Park, 1000 Islands. It is one of my favorite places.

Just before vacation, I took my shot for my Psoriatic Arthritis. I have been on Simponi for about eight months with some relief, but not great. This time, I had a reaction at the injection site which is something I have never experienced before.

At work, I was having issues with one of my employees who is enthusiastic, but a royal pain in the butt. She was working on a project and had managed to take a small pilot and manifest it into a major fiasco that was causing issues everywhere. She also was racking up hours that I did not have budgeted as she is per diem. I decided to have a meeting with her and my boss to get some clarity on her role. She went absolutely bat shit in the meeting and accused me of all sorts of mismanagement. She was almost screaming and my boss said nothing. And her main point was that I did not understand because “I am not a clinician”.  Anyone who knows me knows this is a hot button for me. I sat in the meeting listening to her accused me of cancelling meetings with her and not responding to emails and more lies. I felt my chest tighten and thought, “holy shit, I am having a heart attack.” The pain was sharp and frightening. I disengaged from the meeting and let her rant. I figured my boss would see through her lines of bull. But I was extremely upset.

The next day, and the last day before my vacation, I went to see my boss and expected she would say that this girl was nuts. Instead, she lambasted me with “I need to communicate with her and manage her better.” I was stunned.

By then, I was feeling really crappy. I was going to my favorite place in the world and I was anxious and upset. My gut was killing me. I never truly let go of the meeting and situation at work and at night, I was having heart flutters and anxiety attacks. During the day, I felt bloated. I knew my blood pressure was up. My stomach and gut was flaring with pain.

dog2

When I came back, I emailed the employee and asked that she validate everything she accused me of. She said in the meeting she had emails of me cancelling her and using a “tone” with her. I went through my stuff and found nothing; I have been keeping every email she ever wrote. I spoke with my boss who apologized when she came back from her wedding and vacation because she realized she had inadvertently validated this person. With both knew that was disastrous.

dog4

Three weeks from taking the shot, my blood pressure was still extremely high for me and I was dizzy and felt out of it. I was still having some flutters and tightness, so I called the doctor. He ran blood tests on everything and many of my levels were extremely high, including my sugar. (HA1C) By the time I saw him, it was a month from the shot. He decided to put me on a beta blocker to help lower my still high blood pressure. It was a tiny dose of metoprolol.

But OMG, did I have a reaction from it. First I had insomnia, then that went away. Then I was nauseous every morning and the short 20 minute ride to work was a nightmare as there are no bathrooms. I had several close calls. Then the diarrhea was all the time. I was gaining weight every morning which was counter intuitive to the output I was having. I felt like…pardon the pun, shit. I was going to see the doctor again soon. I had all the tests redone and then decided enough was enough and weaned myself off the drug. The results from the lab indicated everything was fine. After going off this drug that was supposed to help my cardiac issues, they all stopped. MY BP at the doc’s visit was 124/80. MY HA1C was back below my prior visits and so were most of my levels. Problems solved.

And this issue with the employee? She went off on a tangent and was spreading lies about me to people. She never validated any of her claims and when I met with her and again called her on it, she said, “oh, let’s not open that all up again.” She was racking up staggering hours and when I called her on them, she would push back with more bullshit. The results of her craziness combined with putting her nose in places it did not belong ended up with another meeting with three directors and myself and my boss, the VP of HR.

dog5

Finally, after almost two years of her torment, she will be put on a plan of improvement that will be so restrictive that she will probably quit. She will be mandated to remain solely in the position she was hired for, which is an instructor and abandon all other pursuits. But if she does not and continues with us, she will surely cross the line in a very short time and then we will severe her from the agency. She will have to eat crow big time because she is facing insubordinate charges but will remain under my supervision. Finally, someone heard me. One of the directors she went to with her garbage suggested she be mandated to go to EAP, for psych support. This employee has burned all her bridges.

And me? I am feeling like my old self for the first time in a long time. Was it just the shot? I do not think so, although a big contributor. I think it was a lot about not being heard and validated. It brought back many feelings from my childhood where I was invisible but took a lot of punishment for the sins of my siblings. I hate when people dismiss me, or say I am over reacting. I hate when I see people getting away with things because they lie or are weasels. I am a good manager and a fair one.  I have never had such a renegade employee in all my thirty plus years of managing people where I had so little control. The stress truly was affecting me. PTSD, the gift that keeps on giving.

 

To Boldly go where no man has gone before…….

Potty I had so many titles for this post.  “Which end is up?” “Danger, blast site!” “It’s all water in the end.” All’s well that ends well.”  “Up periscope!”  Can anyone guess what I am prepping for? I have been perseverating about this for about a month.

I have been having some digestive issues…well actually my whole life. It started when I was a kid. My mom’s remedy was horrible and she used it frequently. I think this is one of the reasons I am having such a hard time. It was quite common in the fifties before they had prepared medicine you could get at the store. (If they had them, my mother never used them) Instead it was a humiliating process with hot soapy water. Ghad! Even now I cringe.

I cannot believe I have shared this memory as it had lurked in my head hidden for years. But there it is. I am usually not bothered by tests such as scans, scopes and so forth as I have had several. I was diagnosed about seven years ago with diverticulitis. It is highly probably that it is part of the disease process from my psoriatic arthritis.

About three years ago, I started having real issues. Scary, “I hope I can make it and no one is in the bathroom” moments, that are the nightmare of anyone who has an issue like this. People with IBS and Crohn’s know of what I speak.

When I was a younger woman, it was the fear of a monthly accident.  And I had some horrible moments that including leaving my uterus in a chair in a conference once. I escaped with blood pouring down my legs. “Gee, I hope no one saw.”  Yeah right. I was so prolific that I used carry a drug store of protection with me everywhere along with a change of clothes. Instead of the riding the cotton pony, I would eye ball sheep!

When I had my period medically stopped, it was like a new lease on life. My last period lasted for three months. I was heading for a transfusion when they decided to stop it at first with a shot and then with a procedure. Lucky for me, I went into menopause and never had an issue again with that.

And now, I still am tied to being near a bathroom for a completely different reason. I joked with my friend that we are only changing the need of protection but we came in wearing diapers, went to pads for different reasons and back to diapers, I am sure.

So I am hopeful that the colonoscopy will not discover anything that can’t be easily fixed. I am also hoping to get some help with the digestive issues that are part of the problem.  I am talking about that food comes and goes almost in the same form. I normally eat a high fiber diet: salad, veggies and fruits. Now,  I can eat like that for only so long before I have an issue. Then, the opposite occurs for a while and on it goes in a cycle of on again and then off. Either way, I am in pain much of the time. I am almost used to it.

Like an idiot, I have done research…. It’s what I do. Unfortunately, I have discovered and now it is haunting me that I have every symptom of colon cancer except bleeding, which is fascinating because I am on a blood thinner.  The one that is weird is feeling cold. I never have felt as cold as I have in the past months. It is an internal chill that does not dissipate with warmer clothes or even tea.  The other symptom is losing weight. I have lost about 23 pounds. But I am trying to lose weight. But in all honesty, I am not trying all that hard. And it is coming off.

So I am off from work tomorrow to drink the Kool-Aid, so to speak. I am scheduled early Friday morning for the actual procedure. I took off not only because of the shared bathroom issue, but because I have been a blithering idiot the last two days. Some people know why, but not everyone. I am frightened also that the prep may cause damage. I am actually scared I will have a blowout. And although I am sounding like I am joking, I am not. I won’t sleep much tonight. I just hope everything comes out alright….. literally.

The Wind beneath my ……

open roses

I am connected to a couple of organizations for Psoriasis and Psoriatic Arthritis. I was going through my emails tonight and there was a post that got my dander up…. And if you know anyone with Psoriasis, that is not a pleasant thing. They do not need help getting their dander up.

The article was talking about how there is a connection to the microbiome in our bodies and Psoriatic Arthritis (PsA). What this means is there is good bacterial in and on our bodies that do many things. When your system is sick, and you have a bacterial infection, you have too many of the bad ones. Other symptoms caused by bacteria out of whack are athlete’s feet and yeast infections, the plague of being a woman. Cellulitis is also a common and very prolific bacterial infection.

When people are often diagnosed for skin rashes, they think they are bacterial. Psoriasis is NOT bacterial. It is a reaction to the immune system being out of order and the skin over produces cells which build up plaques. That is what the rash is. I did not present “normally” with plaque but with little raised circular dotted configurations. It was several years before they figured out what my weird head to toe rash was.  (I was diagnosed with the PsA and they then connected the dots…so to speak.) They thought hives, and I was pretty sure that was it too. I have had hives off and on for my whole life. I was put on antibiotics. Guess what…that was the worst thing they could have done.

My immune system went absolutely haywire. I went through a series of strange symptoms that would show up in labs.  I would rush around being given all kinds of tests; all to find an anomaly, but then nothing would be done. I was tested for parathyroid issues, Hasimoto’s thyroid disease, saw all sort of endocrine doctors, saw nephrologists when my one kidney crashed, I became diabetic with an A1C of 13 from my normal 5. But no one could figure this skin thing. I would itch so much at night I would bleed. My sheets looked like I was attacked by a knife.

Finally, they tested for the RA markers and did a SED test. It was definite for PsA. Finally, (slap your head) the rash was figured out to be psoriasis. By that time, I had some hefty plaque on my scalp which confirmed it.

I have always had gut issues. I will try to not be too graphic. In my family, farting was an art. I was a Picasso. (Ok, I have to stop laughing at this) But in seriousness, this “ability” was not something I thought about much. I also have a loud gut. My bowel sounds do not need a stethoscope to be heard. Matter of fact, my dear friend wants to record them and make a record out of it. As I got older, my digestion became pretty erratic. I think it is one cause of my weight issues. Most often what comes in, goes out the same; no digestion. So…(in honor of the good Doc), I no longer practice my “art” for fear of a big oops, especially in public.

This article I was reading tonight shed light on something. The article talked about the gut having missing bacteria could be a factor in people having PsA. http://www.psoriasis.org/advance/features/microbiome-how-your-bacteria-affects-psoriasis-psoriatic-arthritis

I wanted to scream. NO SHIT!  Totally inappropriate, but truthful. I think about how my gut situation has steadily gotten worse over the years. Most times, I have to eat and have access to a facility pretty pronto. I have has some serious miscalculations (yes Doc, you are not alone) I will have a series of days like that and then just the opposite. Being blocked up is more painful I think. But I am 97% of the time in some form of discomfort all the time.

I was diagnosed with diverticulitis and was hospitalized for it five years ago. The course of meds included IV-antibiotics. My reaction was so bad, that they thought I had C-diff. It came back negative. But I was allergic to the Cipro and presented with real hives head to toe. I was also hospitalized with pancreatitis, hospitalized….given pain meds that locked me up tighter than Fort Knox. We had to blast. That was caused by an infected…. INFECTED gallbladder, which was removed and more drugs were given. Anyone catching on here????

So this article goes on about the investigation to the link of inflammation and the bacterial count in our system. It talks about probiotics.  On my GP’s recommendation, I went on probiotics. ONCE! My reaction was the worst case of almost not making it to the potty ever. Talk about a bowel cleansing. Yikes! I was sick as a dog for several days. I obviously stopped them. However, for the past two years, I have suffered from chronic issues that have ramped up to be like having Crohn’s. Last year, the Enbrel I had been on for eight years stopped working. My immune system had become “numb” to its affects. The result is my PsA is in full bloom and my gut is also blossoming and it ain’t pretty. I have days when the pain is so great and the reaction to food is so violent that it is amazing there is a bathroom left. You would think I would lose weight. But no; just the opposite. I put on thirteen pounds since last May. Fortunately, I have now lost 18 being on Weight Watchers. But it is extremely hard. For one thing, my ability to eat raw veggies is absolutely gone. I cannot tolerate carrots at all. Too many luncheons of salad and I am in extreme pain. I love veggies and I do not eat meat. But I cannot eat a lot of other things now. I also feel just terrible, tired, and irritable and gassy…. And not in that order.

But in the article at the end, it explains that the OTC, or everyday currently available probiotics are not the answer to the solving the connection with PsA. I will gladly volunteer to trial a product. The article leaves the possible cure for this terrible disease just hanging. It infuriates me. If they would spend one day with me in a small, warm room with no breeze…..that cure would be on the market pronto.

My Pac Man life

pacman-2

When I let the dogs out this morning, I noticed they had dug little paths in the snow going off in various directions. They look like the little icons in Pac Man running and then stopping, turning around and going in a different path. The selection was limited because we have so much snow. I watched and thought, this is what I feel like lately.

I am at loose ends again with seemingly no direction. I wonder if there will ever come a time when I won’t feel like that. I would think at this point of my life, I could relax and not worry about “things”.

Winter is not a great time for me and at this point I am so done with the snow. We are expecting a big storm again starting today, into all day tomorrow with snow fall up to fifteen inches and ending with a coating of ice. I can hardly wait. ::sarcasm::

I started fretting about it yesterday, turning myself into a raging bitch by late morning. My husband and I went to do our weekly shopping and so did the entire world.  We were all in the smallest of all the Wegmans. People had that glazed look as they would stop in an aisle and ponder the plethora of soups. I like to go quickly and I am a no-nonsense chic when shopping. Get in and get out. Yesterday, the plodding of the other shoppers was like the little ghosts in Pac Man that would impede the passageways.

I do not want to drive in it tomorrow. Bottom line: I am terrified of driving in snow lately. I am not sure when that all started, but I have to drive ten miles one way to my job. I have hills and curves, open fields of blowing snow and rush hour lunacy to contend with. By the time I get either to work or home, I am a mess with all my muscles in a clinch so bad they burn.

This is on top of the fact that I have not had a shot so my PsA is raging, which is a perfect way to describe it. So if I got stuck, I would be done. I can barely walk right now into the building at work, and that is when they plow. Last week, the plow guy never came and we all were stuck in the lot waiting for the environmental facilities guys to dig us individually out so we could drive home.

Right now, fear is my biggest ghost. But I do not have the strength to fight it. What is even worse is I don’t care. I would like to hole up in bed for the rest of the month, but then I am in so much pain that I cannot sleep, so that is not an option. Just lying there is great for about two hours and then I hurt from that.

And this is all because of the idiots who I had to deal with from the drug company. I took one of my stash of other shots (Enbrel) on Thursday with the doctor’s permission. The nurse who called read the note he wrote wrong and at first told me that I couldn’t. She called back about five minutes later after I had been crying in my frustration and apologized that she had read the note incorrectly and that I could take the shot. Again, what if she had not reread it? What if it was life threatening and she reads it wrong? Holy crow, this is what is out there. The Enbrel did not work, which is why we are switching to this new shot (Simponi) which was so screwed up in the shipping of it. I do not even know if this Simponi is going to work until I take it enough. I have to wait another two and half weeks to even order the next round. I should be a hot mess by then.

So why do I not just stay home tomorrow? Fear and guilt. We never close and the guilt stems from the visiting clinicians who still have to go out and make house visits. But I am not thirty years old and they chose that job.

All these little ghost popping up and stopping me. I always loved that sound that Pac Man made when he was defeated. That is how I feel …….   Rrrrrreeennnnrrennnnrn….. ::gone::

Musings on a dark Sunday Morning

snow 2014

This last week was a very interesting week. It had a mixture of joy and also a reality check. I am two months away from my favorite time of the year. The anticipation is almost as good as a young child waiting for their birthday. But today, I am up early sitting at my table with my cat purring to my left and a hot cup of coffee to my right. The doggies are snuggled up in their couch beds and hubby is asleep. There is an ominous bank of dark clouds to the west and the light is filled with that gloom the proceeds a snow storm. The forecast is calling for over a foot today and into tonight with more tomorrow. I do not have to go anywhere until tomorrow morning and I am not going to start to worry until tonight.  For now, my bliss is radiating and warming my heart.

I am trying to enjoy the simple good things in my life. I had a kick in the head this week which prompted me to revisit things. My mother-in-law (MIL) has Alzheimer’s. She has gotten very bad since Christmas or maybe she was then but there was so much going on I did not noticing. This week, my Father-in-law (FIL) went to emergency for chest pains. Turned out to be GERD and was fine, but they kept him overnight. Someone had to stay with MIL. My hubby and I were elected. I want to spend about an hour on the selfishness of my sister-in-law, but that will change my mood and so I am not going there.

My MIL is a sweet little French woman. When I met her six years ago, she was sharp, funny and impeccable about her looks. She went to the hairdresser every week, had her nails done, and dressed with simplicity and elegance. She and FIL lived in Florida and we could not afford to come down and visit. They moved up here after she had surgery for breast cancer. It changed her.

Now she cannot remember her own children. Funny, she knows who I am completely. I make her laugh. She does not do much of that. I also listen to her. Her family does not deal with her well. She does not take care of herself at all anymore. She smells and her hair is a mess. She does not remember she is hungry or when she has eaten or had something to drink. She constantly repeats the same five questions over and over. It is hell for my FIL who is 94.His guilt runs so deep that he will not put her in a memory care unit where she really needs to go. My brother-in-law had it all set up but again, my SIL stopped it. She won’t do anything to help and does not want her inheritance to be spent on more expensive care. Again, I am not going there right now. So they two of them watch TV at full blast because they cannot hear, eat the over-salted crappy food served in the dining room or delivered and sleeping. They do not go out as it is too much for my MIL.

My wake-up call is that this is my future: Living in a tiny apartment with no future but death. It could make anyone crazy. So with whatever I have left, I want to make it good. I do not think I will live as long as they are either. They were very healthy until the last five years. They had a good life. My FIL retired at 55 from the post office with a healthy pension from there. They traveled and participated in life with all the gusto they had. This disease has robbed them of those pleasures.

My MIL does not do well with a lot of people in the room, and yet, every holiday we pack fifteen or more people in the tiny apartment. My husband is the worst for spending time with them. He never goes over. There is a lot of painful history for him which he will not share. But when the chips are down, his parents call him. He spent 24 hours with his Mom this week and it was very difficult, but he came home also a lot more appreciative of what he has.

Another event this week was the situation with my shot. After haggling with the pharmacy every night for two weeks for hours, they said they were going to ship on Saturday. Saturday came and went and no shipment. I called my doctor’s office on Monday, who called them and they said they did ship. And they did…but the delivery was left upstairs by the door we do not use tucked away where we did not see it. So it sat outside in subfreezing temperatures for two days. It was ruined. I thought they had lied to me as they had been doing for two weeks, so I did not look for it when it was not where they always put it. I have been receiving shipments at the lower front door for 15 years. They will not ship another. This shot costs over $1800.00 so I am SOL. My pain level has steadily increased to the point I cannot sleep for more than four-hour blocks. My ankles and knees are giving out and my neck feels like it has two screws that are being turned daily. I am grateful that there is something out there that will help to lower this pain. If this was thirty years ago, I would not have much choice but to suffer. No wonder people drank rheumatism medicine. I have a stash of my old prescription shot in the refrigerator which is good for two years and I am going to take one of those for now. It does not work as well as the new shot, but it is something.

The bright spot of the week is I have a new office at work. My old office was in the upstairs center of the building. I had no natural light at all. I had three incandescent lamps on to create the feeling of natural light. My new office is huge and has a window. I do not have a door, but I did not before either. It is walled off with cabinets that face the hall for another department. It was a large space where the Meals on Wheels volunteers had but they have been moved to a new area. We are growing so big that the whole building is be rearranged. When I was approached about the move, I asked about the space and they were thrilled to put me there. They built it exactly to my specification which was wonderful.  I was the first office and now it will create a change of movement. They move someone in on Monday to “the hole”, my old office. My new place is twice the size and I have a window. The roof of the building is the ceiling so I can hear it rain and storm. We can hear the geese honking as they fly over. But I could not see anything. I would have to find a spot to go to if I wanted to see what was happening outside. This was the window I would go to. It was meant to be mine. I left the new place a mess on Friday with all the boxes still packed. I was too sore to unpack after moving in. It will be my project this week. It will really make a difference for me at work. Where I was before, everyone can hear you breathe as I was surrounded by other cubbies. I could not make a phone call, or listen to music or forest sounds, which I like. No plants would grow in the lack of light. Even the overhead fluorescent lights were turned off because the girl behind me got headaches. It was so dark with dull grey cloth panels for walls. My new office is pale green and one wall is very pale blue and looks white. I have more cabinets and space. I have places for my photography. Did I say it has a window?

I had my first meeting with our CEO also this week. She is a sharp lady. She was very pleased as I came prepared with my 2015 year work plan. I was right in line with her thoughts so we hit it off great. She is a no-nonsense nurse who wants to be involved directly with her agency. I like her. Things are going to get shaken up pretty quickly and the Crone Mafia better be prepared. One QA nurse who had 43 years there was offer the opportunity to retire and leaves this week. The CEO, named Jane, also shared her amazing weight loss of over 150 pounds. She was very encouraging. She knows how hard it is. She said I can come for encouragement anytime.

And on that point, I have lost almost 12 pounds for my first month. WW is coming in and doing a meeting starting on Tuesday and I am signing up. I will keep my online account as well. We had a party on Thursday with two chocolate cakes. I took two pieces, ate about a third of each and wrapped them up to chew on. The next day I took two mouthfuls, and threw them out. This is significant for me because chocolate cake is my favorite food. I have discovered that a taste is often enough. Even the hubby is getting into it now at home. He is not as dedicated, but he is dropping a few pounds here and there.

My cat is  bathing herself and singing away. Magoo did not come out of her room for almost a year and when we had construction done last year, she went back to hiding. For her to spend every morning with me is a treat. It is already snowing now, so I am sure the forecast will change with more snow. I would seriously think about calling in tomorrow, but I have a new office to set up. Did I tell you it has a window?