OK I guess this is a personal diary because although I am extremely active politically I find myself lately at point non plus specifically for personal reasons.
I have Crohn's disease and I've had a major relapse, or what I call a "spectacular crash and burn" where despite warning signals and many attempts to avert my exact situation nothing worked. Yeah, I saw the wall coming, I hit the brakes hard, even the auxiliary ones and yet SPLAT!
So I eneded up in the hospital loaded to the gills with dilaudid for pain, Prednisone for inflammation and various vile potions to get my "sewage" problems under control so that an X-ray could see inside and give my doctors a better idea of why yet again I found myself in a place that I hated.
I don't hate the hospital because it has no purpose. I'm a nurse and generally I prefer to be on the opposite side of the stretcher helping those that need it. I really hate being on the side of the stretcher needing that assistance. No, more than that it is difficult for me to admit I need help, never mind actually taking it.
But this visit I determined that I would behave. I would be the patient. I would listen to the doctors and nurses rather than argue with them about the details of my treatment. Well it worked! Kinda, sorta but mostly except when they decided (in the absence of my GI doctor- who had the nerve to be off for Memorial Day!) to stop my Humira.
What is Humira? And why would they stop a main part of successfully keeping me in remission for years. Let me explain: there is a class of drugs called biologics including enbrel ,Remicade , and Humira.
They all have one aspect in common they are anti-tumor necrosis factor blockers. Because of my Crohn's disease, as well as my Rhuematoid arthritis, I have too much circulating tumor necrosis factor. So what the heck is that when it's at home. The simplest answer is that it is part of a normal response that your immune system, in this case your lympohocytes produces to keep you from developing tumors and other assorted health disasters. Cytokines are normal proteins that assist in this process.
Tumor necrosis factor alpha.
So what's the problem? Well in the case of someone (moi) in the throes of an auto-immune disease such as Chrohn's, Rheumatoid Arthritis, Lupus, psoriatic arthritis, Reiter's syndrome etc... we all have too damn much circulating TNF factor and it attacks our joints, our GI tracts, our eyes and our skin - believing that we are the enemy. These cytokines leave much damage in their wake.
An overly hyped ctyokine response was responsible for many of the deaths in 1918 from the Spanish flu pandemic and a "cytokine storm" or a severe immune reaction to the unknown quantity of new virus did its damage before science had quite caught up with it yet. It did of course, and this is how life has changed from someone who lived on high doses of Prednisone and a combination of low level chemotherapy using Methotrexate, a drug used in high doses for certain cancers and given IV on a protocol. I take it weekly orally, at a dose of 15 milligrams because it is thought of as a "bridge" drug between the biologics I take, and as they lose effectiveness over time the MTX provides some coverage until the next dose. That's right the drugs like Humira etc...are only effective for varying amounts of weeks before your immune system goes right back to producing still more tumor necrosis factor. Blech! So some are taken at home subcutaneously and some are given IV over several hours - the doctor and your response determines which one you use.
I used to have a Remicade party at my Rheumatologists every 6 weeks with people in a similar position as I, most had straight up RA, others had psoriatic arthritis etc...but we were all there in our lounge chairs for 3 hours with blankets ( it can make you pretty cold and sleepy) and we brought our lunches and chatted on diverse topics often cheering on the newbies who were unsure if this would even help them. It was great and Remicade gave me my life back. I exchanged three hours of time ( and some down time later at home) for a pretty much symptom free six weeks, and best of all no Prednisone!
So what happened? Well, Remicade was a fairly new agent in 2000, not widely prescribed because the patient had to meet many criteria to get insurance or Medicare approval. But I met the criteria and so I was put on a regimen that eventually worked very well for me. BUT...Remicade is a chimerical drug made up of part of mouse DNA and part human DNA. My doctor worried about this, but I hushed him because I was fine, I was doing well ...why worry?
Indeed. In 2008 the whole party came screeching to a halt and before I could even say "Oh, Noes," I had crashed and burned. Nausea returned full bore, I was fatigued, my abdomen swelled to a convincing 6 months or so pregnancy belly. And I was placed on high dose steroids in an attempt to avoid the hospital.
So follow me over the fleur de kos for the rest of my journey.
I have often supplemented all of these medications and doctor visits with managing stress. Part of that management is that I go to a great acupuncturist who keeps me in balance, along with a bodyworks therapist who does massage but also visualizing stressors and helping me plan a better response to the everyday little annoyances that inevitably fill your life when you have young kids and a busy life( or whatever else). Guided imagery with Belleruth Naperstek has helped me immeasrurably getting to sleep, letting pain go, and general immune system affirmations.
I'm not linking to her because I think that's up to other people whether they believe in, or are comfortable with, other avenues. My insurance pays for the acupuncture but for none of the other things I do that is not medicine related. If anyone is interested in the comments I will supply that information for you.
So I was once again admitted to my hospital and tests were re-done. To make a long story short, I was now "immune" or had built up antibodies to the mouse part of Remicade. The party was over. I was switched to Humira SQ, once a week and very slowly I began to come out of relapse. But not soon enough, not before I had lost all my hair except for a few wisps, and my toenails and fingernails. Oh and I grew a beard! The Prednisone had caused me to gain 35 pounds! Along with the other symptoms this was a very low point for me. Eventually the Humira began to help, I had my beauty parlor wax my beard off - nice moustache as well! Eventually my hair grew back and I've kept it pretty layered and short since that. The nails grew back, but it's the kind of thing that you really never forget. I told my Rheumatologist that I looked like a middle-aged man with a beer belly. I think he laughed, but I kind of meant it. The Prednisone alone gives you this rounded "moon face."
The biggest challenge however was getting insurance approval for weekly injections instead of every other week. They refused it twice even though my GI doctor and my Rheumatologist wanted it. So What? pretty much summed up their response. It took a lot of writing.
So in 2010 back to the hospital I went for another extravaganza of "roto rotoring", CT scans, ultra sounds and vile potions to drink. Of course the diagnosis was the same: Crohn's disease and Rheumatoid Arthritis. Recommended treatment : Humira 40 mg Subq every week. So this time the insurance company gave in - with ill grace but gave in nevertheless. My Senator Barb Mikulski helped by sending a letter of inquiry to Blue Cross.
So i was set, or at least I was until April when I hit that wall and I'm still not back yet. When I say I try to manage my stress I lied. There is just some stress that you don't plan for and you don't see coming. Oh I was stressed, I had just been through the second year of college applications this time for my son. SAT's, ACT's, common apps once again became my life, campus visits, you name it. So I was feeling sorry for myself about my upcoming empty nest syndrome. Well, while I was looking one way trying to plan what to do, something really bad happened,
My 18 month old Lab Jenny got her collar caught on my 6 month old Labs collar and my son who was alone at the time could not separate the collars in time. So Jenny died in his arms and Lily barely made it. I came around the corner and tried to resuscitate Jenny but it was too late.
I am grieving as is Philip and we try to support each other but I've had him to a grief counselor and he is working through it. Aside from my own shock and grief I just could not deal physically with my feelings and so I relapsed. I tried to hobble around with it, trying to rest, trying to convince myself that this wasn't bad enough for a relapse.
But it was, and so yes, I ended up in the Hospital feeling a failure again. I needed pain meds, hydration, rest and a plan. A Plan how not to do this again. My GI doctor told me point blank that I wasn't taking care of myself. That I needed two days every month to do a cleanse and that if my family couldn't give me that time, then I needed to check into a hotel and do it that way. Otherwise, I was going to keep this up and we were going to have to keep meeting this way. I respect him very much and he's right so I promised him I would. The payback was that I had to drink a gallon of this vile Miralax in order to give him a clear enough X-ray or I wasn't going home. So I drank the whole thing, one of the more hideous experiences of my life!
So at the moment, I am working sort of from my laptop at my own pace. My employers understand, they want me back so they're giving me time.
My idea or main reason for publishing this now, is that I know quite a few people who are having health issues where the reasons aren't clear or the struggle is day in, day out and its success is questionable. I wanted to give "us" a place to discuss these things, ask questions or just plain grouch about what a horror life has been lately. Despite the added misery of seeing Mitt Romney and pictures of him in his Mom jeans.
I have one thing to add, two very kind kossacks gave me great help, both concerning the extreme nausea that was sapping my will to live:
Both are Rescue Rangers, as am I, so they heard me whining about my nausea and they jumped in with some wonderful advice:
The first one instructed me to get sublingual zofran (Odnesatron) it's an H2 agonist and is not mood altering, it just lifts the nausea. IV works great but you need a hospital for that, the oral dose does nothing for me. So I tried the sublingual and there was sweet relief. Best thing my doctors have no problems prescribing it since it's not addictive. You have to have your fun somewhere and this is pathetically one of mine.
The last is a simplistic recipe for bread pudding given to me by a brave woman who has suffered cancer and all the debilitating nauseau that chemotherapy can throw at you.
The key here is those needing it, can't cook for ourselves, the thought of food repels us and yet we need nourishment. My 19 year old daughter has made it for me three times and each time she gets better at it. She is quite proud that she is helping her Mom through this rough patch. So here goes:
And, with no more ado, the bread pudding recipe:
Old Fashioned Bread Pudding
Ingredients:
1 package (4-serving size) Jello Vanilla Pudding Mix (not instant--you want the kind that you cook)
1/4 cup sugar
3 cups milk
1/4 cup raisins
2 Tbsp. grated lemon rind (optional)
1 Tbsp. butter
1/2 tsp. vanilla
6 slices (or more) cubed bread, dry.
1/4 tsp. cinnamon
1/8 tsp. nutmeg
Combine pudding mix and 2 Tbsp. sugar. Add 2 cups milk, blend well. Add raisins and lemon rind. Cook and stir over medium heat to a full boil.
Remove from heat, stir in butter and vanilla. Set aside.
In a medium bowl, pour remaining 1 cup milk over bread cubes to moisten. Stir into the pudding mix.
Pour the whole mess into a 1 quart baking dish. Combine remaining sugar and spices. Sprinkle over pudding.
Run under the broiler until the sugar/spice mix is browned and bubbly (around 4 minutes)
Serve warm. Extra good with heavy cream, and damn the calories!
That is the recipe as I received it. Here are my personal changes:
*I don't add the lemon rind usually, although it provides a nice flavor twist (good for when you're not queasy)
*I also use a half-cup or more raisins.
*The choice of bread is important. My best results have come from dried French bread--it holds up to the pudding better and provides a satisfying substantiality to an otherwise soft food. I usually add more than the measly 6 slices. My great-aunt used to use stale cake in hers, but we never have cake long enough to let it go stale.
Usually I eschew mixes--cake, pudding, or otherwise. This is the one recipe I'll use a mix for. It always turns out well.
This particular bread pudding probably saved me from IV nutrition, and after the bone marrow transplant, it was the way I worked my hyper-nauseated system back to accepting food. So there's a therapeutic component to my advocating this recipe.
For those of you in crisis I wish you peace and love. To those of you in pain, I can stand with you and I can listen. To those of you who are in an undiagnosed hell - just hang in there and persist.
Tomorrow will be kinder.
