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January 22, 2003 - 2003, imagine... I have made it to another year. It will be 17 years now that I have known as of April 17, 2003. Of course, that doesn't mean that I was infected then, that was just when I received the positive result. 17 years, I am happy with that. I turn 40 this year also, a milestone I promised myself I would see. I take the time here to reflect back on all this because I was brought to my mortality once again last week on the 15th during our Task Force meeting. We lost another founding member of the group that morning, Rev. Dr. Jackie Terry Bagley, Sr. Rev. Bagley was instrumental in involving men of color in the fight against AIDS in the Detroit area and though his health often failed him, he never let it stop him from extending a hand to another in need, and often putting them before himself. He is already deeply missed by many people and I will miss him as he was a man I looked up to for inspiration and wisdom. He was a bold and outspoken man, but he spoke from his heart and his soul. I pray that soul lives on... As for myself, I have had a few changes in my health care and I am finally getting some issues addressed. I have switched doctors and he has already changed my pain meds to something that actually relieves the pain. I have two herniated discs in my back which are pinching a nerve to my groin and he has referred me for physical therapy which I started this week. If the PT does not work after a while, he also stated we would then look at maybe the possibility of some long term pain management. He also gave me temporary "Handicapped" status so I could get the state tag for the vehicle. On top of this, the arthritis is getting worse in my shoulders and back, and I now also have it in my knee. The PT people stated there was nothing that PT could do to help this, but some resistance exercise would help to keep the bones stronger. Another development is a cyst which has formed on my left testicle. This was found from an ultrasound he sent me in for when the cyst made it's presence known by swelling up and hurting for a few days. I have not heard what he plans on doing about this yet and my next appointment with him is not until February 21st, so I am sure I will be calling the nurse before then to see if he has decided to do anything. It's not swollen anymore, but it still bothers me now and then and I want to know whether or not this is something more than "just a cyst". Not letting this all get me down, I am in the mist of a busy schedule with some Legislative Education Days coming up in February, our Task Force Retreat the end of March where I will be doing 3 workshops as well as other things all weekend, and of course, I will be back in DC in May for AIDSWatch. So if I seem to be slow with more updates, please forgive me in advance, but I will try to be more proactive this year with the journal than I was last. April 1 - Our world is in a time of trouble and it seems to be everywhere. Fortunately for me, I am not having too bad of a time. I just ask spirits to watch over us and keep us all safe. This update finds me happy and well. I had good success in getting the herniated discs to stop bothering me thanks to some good physical therapy. It still bothers me at times and I know I still need to watch every little move I make as to not create another problem. At least this doctor admitted that this bone loss is related to the protease inhibitor and since I stopped that, started some small exercises and upped my intake of calcium, this can turn itself around in time. I can not update you on my recent counts, but I can safely say that things must be OK. The doctor drew blood the last time I was in as his office thought my old clinic was still doing my blood work, which they were not. He said he would call if there was a major shift and there was not. I go in a week before the next appointment, so I should be able to update you after I see him next time and let you know how things are going. I do believe he will want to discuss adding another med to my regimen as the NIH put the report out that they were stopping the recommendation of Trizivir alone as 40% of those on it alone were showing signs of viral activity after 4 months. My last viral load was a bit higher so I am curious to see if the last he did was any higher and what he may say. We will see I guess. Other than that, I have been busy with some Legislative education work as our Task Force worked with the HIV/AIDS Alliance of Michigan to go to Lansing for a couple of days to hopefully educate our elected officials of the importance of continued funding of HIV related issues. It was conducted on the same basis of AIDSWatch, which is the largest annual constituent-based federal HIV/AIDS advocacy and education event in the nation. AIDSWatch participants include people living with HIV and their families, care providers, and AIDS advocates. I urge you all to visit NAPWA's website and register for this important event. I have also just finished up the weekend retreat with the Task Force which was a great time and I think a lot of newly infected people learned a lot this weekend. It is a shame this may be the last one. Our Task Force was de-funded and now there is a new advisory group being formed for the state to use for PWA input into the planning process and after some of the people actions, the state may not think there is justification there to hold this event again being there is this budget crisis all over our country. Monies need to be directed to direct care as much as possible and the fluff must go away you know. I just hope that this does not lesson the PWA voice we have worked so hard to have heard over the last 10 years of the Task Force's existence. I do know my work is not over in my fight to continue to educate others on HIV and my advocacy for those who still live with it. Those who choose to discontinue their assistance to the state were only in it for the wrong reasons anyway if they think the changes are not for the better. (It did get quite ugly before the state pulled the funding, including personal attacks of racism and sexism, which is the reason the state pulled in it the first place.) Now maybe people will get back to addressing the needs of the PWA instead of the personal agenda of those only looking out for themselves. We will see on that one too I guess... In this world of turmoil I send love, peace and happiness out to all of you and I hope you and yours make it out of this conflict safely. July 23 - I figured I better get back on this and update it since it's been almost 3 months. I have been keeping myself as busy as possible with the nice weather. Not too much else going on these days. With the Task Force gone, my time has been focused on local activities and I also took on a part time job. I am working with a friends family at a neighborhood grocery, with a deli and actual meat counter. You don't see that too often these days. So I am learning some new trades and trying to get a bit more coming in being our bills seem to keep increasing. I have also taken on a new task as board member of the Michigan Hepatitis C Foundation. I felt this a good idea as many of my friends have Hep C and/or HIV and the two seem to have a lot of the same needs as far as prevention work goes. I am amazed at the lack of funding for both care and prevention for this virus, but as I am finding out, it hits the same populations as HIV and I understand a little more... I am also in the beginning stages of looking at going back to school to learn more about web design. I would like to get a business of my own started and have done so for some people with what I know, but I would like to learn more as I have gotten Flash to create better sites and need to learn how to incorporate it into web sites and a bit more. I have taught myself about as much as I think I can, so schooling is the best answer. I hope I can work all this out soon as I can go back to work full time if I gain this knowledge. I will be going back to see my doctor this Thursday to find out my blood work results. The normal blood work came back OK, but for some reason, the state lab was a bit slow and my CD4 and viral load results were not in when I saw him last. I will also be finding out the results of another bone density test which he ran to see if I was loosing any more bone since my arthritis has seemed to become worse as of late. I will share the results with you as soon as I have them. I think I should also talk to him one more time about being so tired all the time. I don't seem to have energy to do anything and even taking mega-vitamins has not helped. He said last time that the blood work looked good and I should not be having troubles, but something is not right, so we need to discuss it again. And this time I will make him listen and do something about it. Hope you all are having a great summer so far! I know with the club events and travels Dan and I have been doing, we sure are! |
